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Many healthcare systems use electronic health records. Researchers use data from these records in their studies. Some records have missing or incorrect data. When this happens, people might not be able to trust a study's results. The research team wanted to:

• Create guidance to judge whether data that a study used were high quality
• Find new ways to display the quality of data
• Learn why researchers don't always report the quality of data that they used in studies

To access the methods and software, please visit the DQCODE-A-Thon GitHub.

Patients often take surveys about their health or quality of life. Results from these surveys can help doctors meet patients' needs. Young children can't fill out surveys by themselves. They may not be able to read or understand the questions. Most often, parents or hospital staff read the questions aloud, or parents answer the questions for their children. But this method may not give accurate results.

In this study, the research team tested three surveys for children ages 4 to 12 who are going to have or who recently had surgery. The first survey asks about general health. The second survey asks about feeling worried before surgery. The third survey asks about pain after surgery. A computer program reads the survey questions aloud. The surveys are animated and choices for the answers appear as cartoons.

The team wanted to learn if the surveys were

• Accurate, or correctly capturing how the children were feeling
• Reliable, or if children answered in a consistent way when asked similar questions

Dementia is a health problem that can cause memory loss, trouble doing daily tasks, and behavioral problems. Sometimes patients with dementia and their caregivers have goals for patients that their usual medical care doesn't include. For example, caregivers may want to maintain patients' social activities in the community. They may also want patients to continue to live at home.

The research team wanted to test a process called Goal Attainment Scaling, or GAS, to see if patients and their caregivers could identify, set, and meet goals that were important to them. The team also wanted to see if GAS was valuable to patients and their caregivers.

Many research studies seek to learn how treatments affect patients' quality of life. Quality of life includes mood and energy. It also includes how people view their roles in their families or communities and whether they can perform those roles. Researchers use surveys to ask about patients' quality of life. But patients may answer the same question differently depending on different characteristics, such as their age or where they live. Some patients may think about their work roles while others may think about their families or social lives. How patients think about quality of life can affect what researchers learn about the effects of treatment.

In this study, the research team tested two surveys they created to measure differences in how patients think about their quality of life. The first, long survey had 74 questions, and the second, short survey had 23 questions.

Patient-reported outcome measures, or PROMs, are surveys that ask patients how they feel and what activities they can do. All PROMs have measurement properties. These properties help researchers understand how well the PROM was designed. For example, one property is the ability to get consistent responses over time. Another is how accurately the PROM measures how patients feel about a health problem. But researchers may not consistently report these properties in studies about PROMs.

In this study, the research team created guidance about reporting measurement properties in studies on PROM.

Healthy sleep is important for a child's well-being, school performance, and mood. Doctors can ask children about their sleep health to identify and treat sleep problems. However, few reliable surveys are available for doctors to use to ask children about their sleep.

In this study, the research team created sets of survey questions that asked children or their parents about sleep health. The team interviewed children and their parents to make sure they could understand the questions and that the questions included sleep health topics important to them.

Part C of the Individuals with Disabilities Education Act authorizes states, with the incentive of federal financial support, to create Early Intervention (EI) systems, which is a primary source of rehabilitation (e.g., physical, occupational, and speech therapy) services for infants and toddlers with, or at risk for, developmental delays. Having worked with two EI Colorado (EI-CO) programs that employed electronic documentation, the researchers sought to leverage their electronic administrative data in order to examine social disparities in EI service use, including specific rehabilitation services.

The dataset for this data archiving project was generated in collaboration with a large, urban EI program in Colorado, a community partner for an NIH/NCMRR R03 study. This academic-community research partnership provided researchers with access to an urban EI program's electronic administrative database; The researchers' goal was to make these data available for further EI research. Therefore, a database was created and a number of variables were derived that could be of importance to EI stakeholders when conducting clinical queries for quality improvement. Examples of derived variables include EI service use intensity (i.e., hours per month) for all EI services, as well as discipline-specific (e.g., physical or occupational therapy) service use. The researchers obtained permission from the partnering EI agency to archive their EI program data through this project.

The dataset included as part of this collection includes 2045 cases for 44 variables; demographic variables include: race, ethnicity, language, sex, age, and developmental condition type.

The Epidemiologic Catchment Area (ECA) program of research was initiated in response to the 1977 report of the President's Commission on Mental Health. The purpose was to collect data on the prevalence and incidence of mental disorders and on the use of and need for services by the mentally ill. Independent research teams at five universities (Yale University, Johns Hopkins University, Washington University, Duke University, and University of California at Los Angeles), in collaboration with the National Institute for Mental Health, conducted the studies with a core of common questions and sample characteristics. The sites were areas that had previously been designated as Community Mental Health Center catchment areas: New Haven, Connecticut, Baltimore, Maryland, St. Louis, Missouri, Durham, North Carolina, and Los Angeles, California. Each site sampled over 3,000 community residents and 500 residents of institutions, yielding 20,861 respondents overall. The longitudinal ECA design incorporated two waves of personal interviews administered one year apart and a brief telephone interview in between (for the household sample). The diagnostic interview used in the ECA was the NIMH Diagnostic Interview Schedule (DIS), Version III (with the exception of the Yale Wave I survey, which used Version II). Diagnoses were categorized according to the DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS, 3rd Edition (DSM-III). Diagnoses derived from the DIS include manic episode, dysthymia, bipolar disorder, single episode major depression, recurrent major depression, atypical bipolar disorder, alcohol abuse or dependence, drug abuse or dependence, schizophrenia, schizophreniform, obsessive compulsive disorder, phobia, somatization, panic, antisocial personality, and anorexia nervosa. The DIS uses the Mini-Mental State Examination (MMSE), which measures cognitive functioning, as an indirect measure of the DSM-III Organic Mental Disorders. In the ECA survey, this diagnosis is called cognitive impairment.

This collection features data from 17,327 participants across 2,005 variables. Data from the Los Angeles, California, Catchment (UCLA) are not included. Baseline data (Wave 1) and Wave 2 data were linked to the National Death Index through 2007, which includes primary and contributing causes of death, International Classification of Disease (ICD) codes, and nature of injury variables.

Understanding which aspects of health and wellness are most important to patients living with HIV can help clinics improve care. Clinics often have patients complete surveys about their health and wellness. This study created new sets of survey questions for people living with HIV.

This study had two parts. In the first part, the research team asked patients living with HIV and their clinicians, such as doctors and nurses, what health and wellness topics they found important. In the second part, the team created sets of survey questions for two topics: domestic violence and social support. The team then asked patients living with HIV to answer the questions.

Understanding patients' expectations and their experiences can help hospitals improve care. Hospitals often send surveys to patients to ask about their care. To create surveys quickly, hospitals sometimes pick questions from an item bank. An item bank is a list of survey questions available to use about a specific topic.

In this study, the research team created an item bank about childbirth care. The team used the item bank to create and carry out a survey about women's preferences and experiences with care during and after childbirth. The team looked at which questions related closely to women's overall ratings of their hospital care.

Chronic pain, which lasts for months or even years, can disturb people's daily lives and their relationships with others. Doctors want to measure how chronic pain affects people's lives so they can help their patients manage pain.

In this study, the research team wanted to measure two aspects of living with and managing chronic pain:

• Pain appraisal describes how people think about their pain. It measures how much people worry about their pain and how well they cope with pain or distract themselves from thinking about it.
• Pain-related self-efficacy describes how confident a person is that they can live well with pain.

The research team created two pools of questions, called item banks, to measure each of the two aspects of living with chronic pain. From these larger item banks, the team created and tested brief versions using two and six questions. These brief versions take people less time to finish than the full item banks.

Patient-reported outcome measures are surveys that ask patients about their health or well-being. These surveys may include questions about sleep, depression, or pain. Many of the surveys now in use don't focus on a specific health problem.

The research team wanted to create and test a process for adapting patient-reported outcome measures for specific health problems. To test this process, the team developed surveys for two health problems, one for heart failure and one for knee arthritis.

How is the process of radicalization understood over time? Do current radicalization to violence differ from earlier waves? How can these understandings be utilized to prevent radicalization to violence and--equally important--understand the reach and impact of programs designed to do so? The overall goal of this project was to pursue the following aims:

• Aim 1: To understand how adversity and social bonds relate to changes in openness to violent extremism over time.
• Aim 2: To evaluate experience and perception of, and the effectiveness of, Countering Violent Extremism (CVE) activities.
• Aim 3: To evaluate mechanisms of change in violent extremism.
• Aim 4: To understand similarities/ differences in experiences and/or histories of Somali youth who joined Al-Shabab vs. those known to have been killed in Syria, fighting with ISIS and other terrorist groups.

The above aims were accomplished through extending an ongoing longitudinal research program to span 5 years, and expanding a psychological autopsy sample to include Somali youth who have left Minneapolis and been killed fighting with ISIS and other terrorist groups in Syria. Data collection for the longitudinal study consisted of conducting an additional wave of structured interviews with Somali youth (between the ages of 21-33); interviews included assessments of structural adversity (resettlement hardships, trauma exposure, and discrimination), social factors (connection to the resettlement community and/or Somali diaspora community, internet use, and level of acculturation) delinquency, gang involvement, civic engagement, and support for legal and illegal (violent) actions in support of political change. The researchers used latent transition analysis (LTA), generalized estimating equation modeling, and linear regression modeling to accomplish Aims 1-3. Aim 4 was accomplished by using a combination of open source data analysis, psychological autopsy and case analysis methodology. The researchers expanded our current in-depth case studies of Somali youth who left Minneapolis to join al-Shabaab (N = 23, males aged 22-30) to include those who joined ISIS or Al-Nusra (N=4, males aged 18-29). Research questions associated with Aim 4 were analyzed using a psychological autopsy method of developing case histories. Case histories were coded for themes and analyzed for convergence or divergence with case histories of youth who joined Al-Shabab. Scholarly products include manuscripts in journals relevant to criminal justice, policy briefs, and interim and final reports. This project builds on partnerships between Boston Children's Hospital, Somali communities, and Georgia State University.

A randomized controlled trial, or RCT, is often the best way to learn if one treatment works better than another. RCTs assign patients to different treatments by chance. But RCTs are not always feasible. In such cases, researchers can use observational studies. In observational studies, researchers look at what happens when patients and their doctors choose the treatments. Traits such as age, gender, or health status may affect treatment choices. These traits may also affect patients' health, making it hard to know if changes in patients' health are due to treatment or to patient traits.

To figure out whether changes in patients' health result from treatment or something else, researchers use statistical methods. Two of these methods are:

• Propensity score, or PS. PS methods compare the health of patients who have similar measured traits but received different treatments. These traits are in patient health records.
• Instrumental variable, or IV. IV methods account for things that may affect treatment choice and patients' health but aren't in the patients' health records, such as personal preference about treatment.

But existing PS and IV methods don't work well when data sets include a lot of traits and health conditions for each patient. Such data sets are called high-dimensional data. In this study, the research team created and tested one PS method and one IV method for use with high-dimensional data.

During care transitions, patients move from one care setting to another, such as from the hospital to home. If not done well, these care transitions can result in health problems for patients and the need for them to return to the hospital.

Healthcare organizations can use patient surveys to measure the success of care transitions. One survey about the quality of care transitions already exists. The survey was created with input from patients but with no input from caregivers and healthcare providers. In addition, the survey doesn't ask about topics that patients may find important, such as caregiver involvement and the time after care transitions.

In this study, the research team created and tested a new survey. To create the survey, the team asked for input from patients, caregivers, and healthcare providers. The team tested whether the survey was

• Valid, or able to correctly capture what it intends to measure
• Reliable, or able to get consistent answers

These data are part of NACJD's Fast Track Release and are distributed as they were received from the data depositor. The files have been zipped by NACJD for release, but not checked or processed except for the removal of direct identifiers. Users should refer to the accompanying readme file for a brief description of the files available with this collection and consult the investigators if further information is needed.

This study is a secondary analysis (syntax only, no data) of Research on Pathways to Desistance [Maricopa County, AZ and Philadelphia County, PA]: Subject Measures, 2000-2010 (ICPSR 29961) and Research on Pathways to Desistance [Maricopa County, AZ and Philadelphia County, PA]: Calendar Data, 2000-2010 [Restricted] (ICPSR 32282).

The purpose of this study was to further existing knowledge of juvenile justice intervention and how juvenile justice intervention is related to positive outcomes during the transition to adulthood. This study examines three main aims using data from the Pathways to Desistance study, which followed a sample of serious adolescent offenders for seven years to examine the desistance process. First, trajectories of secure institutional placement for serious offenders during the study period were identified. Second, trajectories of gainful activities for serious adolescent offenders during the study period were identified. Gainful activities were defined as working or attending school. Third, factors associated with turning points in the gainful activities trajectories were explored. In the course of estimating the gainful activities trajectories, there appeared to be a key moment, around year 3, where multiple trajectories with moderate levels of engagement in gainful activities diverged. Together, these three aims will inform how juvenile justice intervention is related to positive outcomes during the transition to adulthood and identify factors that may be related to positive outcomes and critical turning points in the trajectories of serious adolescent offenders.

Group differences were examined by testing bivariate differences in a broad range of variables: demographic variables (gender, age, and race/ethnicity); study site and year of interview; characteristics of prior service receipt at baseline (location and orientation); school, family and neighborhood characteristics; characteristics of the offense and offense history; individual factors (mental health and substance use symptoms); and risk scores.

Patients and their healthcare providers, such as doctors and nurses, can use survey scores to track the symptoms of illnesses like rheumatoid arthritis, or RA, over time. Tracking symptoms in this way can help them understand if a treatment is working well for a patient.

When researchers create and test these surveys, they want to be sure that patients' survey scores match how severe patients feel their symptoms are. Researchers also want to know what changes in survey results show that symptoms have changed so much that patients might want to change treatment.

In this study, the research team had patients with RA and providers read stories that described what patients felt like with higher and lower scores of two symptoms:

• Fatigue, or lack of energy
• Pain interference, or how much pain interferes with their lives

Patients and providers decided whether each story showed a mild, moderate, or severe level of symptoms. They also gave their views about how large a change in scores would need to be to show that pain or fatigue was getting better or worse.

Patients are often more satisfied with care when it matches their goals. To provide care that matches what matters to patients, doctors and other clinical staff need to communicate well with patients so they can learn about their needs and concerns. Healthcare organizations can use patient surveys to measure how well clinicians communicate with patients. To be useful, a survey needs to be

• Valid, or correctly capturing how well doctors communicate
• Reliable, or getting the same results over time

In this study, the research team created and tested a survey for patients getting care for colorectal cancer that asked about communication between the patient and their care team.

Patients' beliefs and expectations may affect how they respond to treatment. But these feelings are hard to measure.

In this study, the research team created a set of surveys called Healing Encounters and Attitudes Lists, or HEAL. HEAL helps researchers understand patients' beliefs and expectations about treatment. HEAL measures patients'

• Connections with their doctors and nurses
• Feelings about their doctor's office and staff
• Expectations about treatment
• Outlook on life
• Strength of spiritual beliefs
• Comfort with complementary and alternative medicine, or CAM
• The team also used the Patient-Reported Outcomes Measurement Information System, or PROMIS, to measure patients' pain, health, and function. PROMIS is a set of surveys researchers and doctors use for many diseases and treatments.

The team wanted to learn if HEAL could predict how patients respond to treatment for chronic pain. Chronic pain is pain that lasts for months or years. The team used HEAL and PROMIS to look at why some groups of patients respond differently to treatment for chronic pain. Patients got either conventional treatment, such as physical therapy or medicine, or CAM, such as acupuncture, chiropractic treatment, or massage.

The Biomarker study is Project 4 of the Midlife in the United States (MIDUS) longitudinal study, a national survey of more than 7,000 Americans (aged 25 to 74) begun in 1994. The purpose of the larger study was to investigate the role of behavioral, psychological, and social factors in understanding age-related differences in physical and mental health. With support from the National Institute on Aging (NIA), a longitudinal follow-up of the original MIDUS samples [core sample (N = 3,487), metropolitan over-samples (N = 757), twins (N = 957 pairs), and siblings (N = 950)] was conducted in 2004-2006. Guiding hypotheses, at the most general level, were that behavioral and psychosocial factors are consequential for health (physical and mental). A description of the study and findings from it are available on the MIDUS website.

The Biomarker Project (Project 4) of MIDUS 2 contains data from 1,255 respondents. These respondents include two distinct subsamples, all of whom completed the Project 1 Survey: (1) longitudinal survey sample (n = 1,054) and (2) Milwaukee sample (n = 201). The Milwaukee group contained individuals who participated in the baseline MIDUS Milwaukee study, initiated in 2005. The purpose of the Biomarker Project (Project 4) was to add comprehensive biological assessments on a subsample of MIDUS respondents, thus facilitating analyses that integrate behavioral and psychosocial factors with biology. The broad aim is to identify biopsychosocial pathways that contribute to diverse health outcomes. A further theme is to investigate protective roles that behavioral and psychosocial factors have in delaying morbidity and mortality, or in fostering resilience and recovery from health challenges once they occur. The research was not disease-specific, given that psychosocial factors have relevance across multiple health endpoints.

Biomarker data collection was carried out at three General Clinical Research Centers (at UCLA, University of Wisconsin, and Georgetown University). The biomarkers reflect functioning of the hypothalamic-pituitary-adrenal axis, the autonomic nervous system, the immune system, cardiovascular system, musculoskeletal system, antioxidants, and metabolic processes. Our specimens (fasting blood draw, 12-hour urine, saliva) allow for assessment of multiple indicators within these major systems. The protocol also included assessments by clinicians or trained staff, including vital signs, morphology, functional capacities, bone densitometry, medication usage, and a physical exam. Project staff obtained indicators of heart-rate variability, beat to beat blood pressure, respiration, and salivary cortisol assessments during an experimental protocol that included both a cognitive and orthostatic challenge. Finally, to augment the self-reported data collected in Project 1, participants completed a medical history, self-administered questionnaire, and self-reported sleep assessments. For respondents at one site (UW-Madison), objective sleep assessments were also obtained with an Actiwatch(R) activity monitor.

The Neuroscience study is Project 5 of the MIDUS longitudinal study, a national survey of more than 7,000 Americans (aged 25 to 74) begun in 1994. The purpose of the larger study was to investigate the role of behavioral, psychological, and social factors in understanding age-related differences in physical and mental health. With support from the National Institute on Aging, a longitudinal follow-up of the original MIDUS samples [core sample (N = 3,487), metropolitan over-samples (N = 757), twins (N = 957 pairs), and siblings (N = 950)] was conducted in 2004-2006.

The Neuroscience Project of MIDUS 2 contains data from 331 respondents. These respondents include two distinct subsamples, all of whom completed both the Project 1 Survey and the Project 4 biomarker assessment at University of Wisconsin-Madison: (1) longitudinal (n = 223) and (2) Milwaukee (n = 108). The Milwaukee group contained individuals who participated in the baseline MIDUS Milwaukee study, initiated in 2005.

The purpose of the Neuroscience Project was to examine the central circuitry associated with individual differences in affective style that represent a continuum from vulnerability to resilience, and characterize some of the peripheral consequences of these central profiles for biological systems that may be relevant to health. The primary aims were to: (1) characterize individual differences in both emotional reactivity and emotional recovery using psychophysiological measures such as corrugator electromyography and eyeblink startle magnitude, (2) characterize individual differences in brain morphology, in particular amygdala and hippocampal volume, using structural magnetic resonance imaging (MRI), (3) characterize individual differences in activity within the neural circuitry of emotion regulation using both electroencephalography and fMRI, and (4) test the ability of the central indices in this project to predict the comprehensive array of health, cognitive, psychological, social, and life challenge factors assessed in the other MIDUS projects.

To probe individual differences in emotional reactivity and recovery (a key component of regulation) the Neuroscience Project examined both psychophysiological and fMRI measures during the presentation of emotional (positive and negative) and neutral pictures, and these same measures during a post-picture period. The logic of this strategy is that continued activation during the recovery period following a negative stimulus is indicative of poor automatic emotion regulation. Respondents in the Neuroscience Project are a representative subsample of the MIDUS (Midlife in the United States) survey.

National respondents in the Neuroscience Project are a representative subsample of the MIDUS 2 survey sample (#4652).

The raw neuro-imaging data are not available through NACDA/ICPSR; please see the README file for more information about how to obtain them.

The Biomarker Project is one of multiple projects that comprise the MIDUS 3 (M3) "Integrative Pathways to Health and Illness" study. For the past two decades, the overarching objective of MIDUS has been to investigate linkages between sociodemographic, psychosocial, behavioral, and neurobiological variables to account for unfolding profiles of morbidity and mortality across the decades of adult life as well as the maintenance of good health and functional capacities. The study has facilitated analyses that pay attention simultaneously to age, gender, race, and socioeconomic variation in how psychosocial and neurobiological variables are linked. In addition, the M3 data permit longitudinal assessment of the impact of ongoing historical events, such as the 2008 economic recession, on the health of diverse-aged adults, which was also included in the MIDUS Refresher 1 (MR1) assessments. M3 included recruitment of additional twins to facilitate genomic analysis.

The M3 Biomarker Project (P4) includes assessment of multiple indicators of physiological regulation/dysregulation and health according to the basic protocol implemented in the MR1 study, which repeated and expanded the M2 biomarker protocol. The M3 protocol included bone density and body composition assessments at all sites and expansion of Actigraphy, Ankle Brachial Index (ABI) and Gait assessments to all three sites. Data were collected during a 24-hour stay at one of three Clinical Research Units (CRU).

From 2004-2009, an initial follow-up of the original Midlife Development in the United States samples (MIDUS 2) was conducted with expansion of the protocol to include Neuroscience Project data collection and a sample of Black Americans from Milwaukee, WI. The MIDUS Neuroscience Project performed a second follow-up from 2017-2022 of the MIDUS Main and Milwaukee samples (MIDUS 3) on a subsample of those who completed the MIDUS 3 Survey and Biomarker Projects.

The goal was to examine indices of brain aging, function, and structure with a focus on the brain circuitry associated with individual differences in affective style, and to characterize the peripheral consequences of these central profiles for biological systems that may be relevant to health. The primary aims were to: (1) characterize individual differences in emotional reactivity, recovery, and sustaining processes using corrugator and zygomatic electromyography and eyeblink startle magnitude, (2) characterize individual differences in brain morphology and connectivity using structural magnetic resonance imaging (MRI) and diffusion weighted imaging (DWI) (3) characterize individual differences in functional activity within the neural circuitry of emotion using task and resting state fMRI, (4) calculate brain age, and (5) test the ability of these indices to predict the comprehensive array of health, wellbeing, cognitive, psychological, social, and life challenge factors assessed in other MIDUS projects. To probe individual differences in emotional processes, psychophysiological and fMRI measures of emotional responses to the presentation of negative, positive, and neutral pictures, and these same measures during a post-picture period were examined.

Emotion-influenced memory was assessed at both the psychophysiological and imaging sessions: (1) Free recall of the presented affective pictures at the end of the psychophysiological session. (2) Memory and likeability ratings for neutral faces paired with the affective pictures in the imaging task. Finally, selected tasks from the CANTAB assessed affective biases and cognitive processes important for emotion regulation.

The MIDUS Refresher Neuroscience Project studied 138 participants from the Refresher sample. These respondents included two distinct subsamples, all of whom completed both the Survey Project and the Biomarker Project's assessment at the University of Wisconsin-Madison: the Main Refresher (n = 93) and Milwaukee Refresher (n = 45) samples.

The purpose of the Neuroscience Project is to examine the central circuitry associated with individual differences in affective style that represent a continuum from vulnerability to resilience, and to characterize the peripheral consequences of these central profiles for biological systems that may be relevant to health.

The National Children's Study (NCS), authorized by the Children's Health Act of 2000, was a large-scale study to investigate environmental influences on child health and development. The NCS Vanguard (Pilot) Study, launched in 2009, tested methods for the larger Main Study and enrolled approximately 5,000 children across 40 locations by July 2013. The Main Study followed 100,000 children from before birth to age 21. On December 12, 2014, the NIH Director closed the study per advice from the expert review group.

The NCS Archive, created after the study's closure, offers researchers access to over 250,000 data and samples, including nearly 19,000 biological and 5,500 environmental samples from the Vanguard Study. The archive contains study visit data from preconception to 42 months post-birth, neuro-psychosocial and cognitive assessments, physical examinations, study protocols, operation manuals, data collection instruments, and more.

The NCS Archive includes various arts-related variables that were part of the study questionnaires and interviews conducted with participants and covered a range of activities and exposures. Specifically, the study captured data on children's participation in artistic activities, including music, dance, drama, and visual arts. Information was collected on the frequency and type of arts engagement, such as attending classes, participating in performances, or creating art. Examples include:

• DANCE_DAYS: The average number of days per week someone dances with the child.

• THEATER_DAYS: The average number of days per week someone engages in theater, play-acting, or make-believe with the child.

• MUSIC_DAYS: The average number of days per week someone plays musical instruments, sings, or listens to music with the child.

• DRAWPAINT_DAYS: The average number of days per week someone spends drawing or painting with the child.

• ART_EVENT_DAYS: The average number of days per week someone takes the child to arts-related events outside the home.

• DAYS_READ: The number of days in the past week that family members read stories to the child.

• TOTAL_NUMBER_BOOKS: The total number of children's books in the home, including library books.

• FREQ_BOOKS: The average number of days per week someone reads or looks at books with the child.

• READ_STORIES: The number of days per week stories are read to the child.

• TELL_STORIES: The number of days per week stories are told to the child.

The NCS Archive is available in NICHD's Data and Specimen Hub (DASH) for researchers to request access and conduct their own studies. For more information, researchers can consult the National Children's Study Archive: Study Description and Guide or contact NICHD's Data and Specimen Hub at [email protected].

The NCS-2 was a re-interview of 5,001 individuals who participated in the Baseline (NCS-1). The study was conducted a decade after the initial baseline survey. The aim was to collect information about changes in mental disorders, substance use disorders, and the predictors and consequences of these changes over the ten years between the two surveys. The collection contains three major sections: the main survey, demographic data, and diagnostic data.

In the main survey, respondents were asked about general physical and mental health. Questions focused on a variety of health issues, including limitations caused by respondents' health issues, substance use, childhood health, life-threatening illnesses, chronic conditions, medications taken in the past 12 months, level of functioning and symptoms experienced in the past 30 days, and any services used by the respondents since the (NCS-1). Additional questions focused on mental disorders including depression, bipolar disorder, specific and social phobias, generalized anxiety, intermittent explosive disorder, suicidality, post-traumatic stress disorder, neurasthenia, pre-menstrual dysphoric disorder, attention deficit/hyperactivity disorder, oppositional defiant disorder, conduct disorder, and separation anxiety. Respondents were also asked about their lives in general, with topics including employment, finances, marriage, children, their social lives, and stressful life events experienced in the past 12 months. Additionally, two personality assessments were included consisting of respondents' opinions on whether various true/false statements accurately described their personalities. Another focus of the main survey dealt with substance use and abuse, nonmedical use of prescription drugs, and polysubstance use. Interview questions in the NCS-2 Main Survey were customized to each respondent based on previous responses in the Baseline (NCS-1).

The middle section contains demographic and other background information including age, education, employment, household composition, household income, marital status, and region.

The last section of the collection focused on whether respondents met diagnostic criteria for psychological disorders asked about in the main survey.

The NCS-2 was a re-interview of 5,001 individuals who participated in the Baseline (NCS-1). The study was conducted a decade after the initial baseline survey. The aim was to collect information about changes in mental disorders, substance use disorders, and the predictors and consequences of these changes over the ten years between the two surveys. The collection contains four major sections: the main survey, demographic data, diagnostic data, and state, county, and tract FIPS data.

In the main survey, respondents were asked about general physical and mental health. Questions focused on a variety of health issues, including limitations caused by respondents' health issues, substance use, childhood health, life-threatening illnesses, chronic conditions, medications taken in the past 12 months, level of functioning and symptoms experienced in the past 30 days, and any services used by the respondents since the (NCS-1). Additional questions focused on mental disorders including depression, bipolar disorder, specific and social phobias, generalized anxiety, intermittent explosive disorder, suicidality, post-traumatic stress disorder, neurasthenia, pre-menstrual dysphoric disorder, attention deficit/hyperactivity disorder, oppositional defiant disorder, conduct disorder, and separation anxiety. Respondents were also asked about their lives in general, with topics including employment, finances, marriage, children, their social lives, and stressful life events experienced in the past 12 months. Additionally, two personality assessments were included consisting of respondents' opinions on whether various true/false statements accurately described their personalities. Another focus of the main survey dealt with substance use and abuse, nonmedical use of prescription drugs, and polysubstance use. Interview questions in the NCS-2 Main Survey were customized to each respondent based on previous responses in the Baseline (NCS-1).

The second part contains demographic and other background information including age, education, employment, household composition, household income, marital status, and region.

The third part focuses on whether respondents met diagnostic criteria for psychological disorders asked about in the main survey.

The fourth part contains respondents' state, county, and tract FIPS data.

The Calendar data files are comprised of 47 total parts spread across 13 distinct topical domains.

• Academic Achievement
• Antisocial Activity
• Community-Based Services
• Contact With the Justice System
• Court Monitoring
• Gainful Activity
• Head Injury
• Living Situation
• Making and Spending Money
• Medication
• Out of Community Placement
• Romance
• School

Each topical domain contains multiple reference periods for looking at the topic across the entire data collection period of the study.

Users who request these restricted data should first review the documentation available from NAHDAP (user guide and frequency codebooks) and from the Pathways Website (domain content codebooks). This review will help determine which specific datasets will be needed for your project. The "Research Description" in ICPSR's Data Access Request System (IDARS) must include a specific explanation of why you need each topic domain selected on the "Data Selection" page in IDARS. Most projects should only require one reference period per topic domain being requested. Data requests for all reference periods within a given domain will not be approved without a satisfactory explanation of why all of the reference periods are required for your project. Since the Calendar data collection is very extensive and Restricted Data Use Agreements are only for 2 years, data requests are not expected to need the entire Calendar data collection.

The Pathways to Desistance study was a multi-site study that followed 1,354 serious juvenile offenders from adolescence to young adulthood in two locales between the years 2000 and 2010. Enrolled into the study were adjudicated youths from the juvenile and adult court systems in Maricopa County (Phoenix), Arizona (N=654) and Philadelphia County, Pennsylvania (N=700).

Respondents were enrolled and baseline interviews conducted from November 2000 to January 2003. Follow-up interviews were then scheduled with the respondents at 6, 12, 18, 24, 30, 36, 48, 60, 72 and 84 months past their baseline interview.

The enrolled youth were at least 14 years old and under 18 years old at the time of their committing offense and were found guilty of a serious offense (predominantly felonies, with a few exceptions for some misdemeanor property offenses, sexual assault, or weapons offenses).

The Pathways to Desistance study was a multi-site study that followed 1,354 serious juvenile offenders from adolescence to young adulthood in two locales. Enrolled into the study were adjudicated youths from the juvenile and adult court systems in Maricopa County (Phoenix), Arizona (N=654) and Philadelphia County, Pennsylvania (N=700) from 2000 through 2010.

This study looks at interviews conducted with the collateral informants who participated in the study. The collateral informants were nominated by the main study participant and represented individuals who "knew the study participant well". At the interview baseline the collateral informant was usually a biological parent. During the three follow-up interviews the majority of collaterals were a friend. Collateral informants could also be a sibling, significant other, or relative. Collaterals were asked questions in regards to the main study participant's life, allowing for comparison between responses provided by two sources. A baseline interview was conducted with the collateral after the baseline interview took place with the main participant. Additional waves of follow-up with collaterals took place at 12, 24, and 36 months. A collateral report is not present for all of the main study participant interviews across waves (see response rate below).

The Pathways to Desistance study was a multi-site study that followed 1,354 serious juvenile offenders from adolescence to young adulthood in two locales between the years 2000 and 2010. Enrolled into the study were adjudicated youths from the juvenile and adult court systems in Maricopa County (Phoenix), Arizona (N=654) and Philadelphia County, Pennsylvania (N=700).

This study looks at interviews conducted with the collateral informants who participated in the study. The collateral informants were nominated by the main study participant and represented individuals who "knew the study participant well". At the interview baseline the collateral informant was usually a biological parent. During the three follow-up interviews the majority of collaterals were a friend. Collateral informants could also be a sibling, significant other, or relative. Collaterals were asked questions in regards to the main study participant's life, allowing for comparison between responses provided by two sources. A baseline interview was conducted with the collateral after the baseline interview took place with the main participant. Additional waves of follow-up with collaterals took place at 12, 24, and 36 months. A collateral report is not present for all of the main study participant interviews across waves (see response rate below).

The current Collateral Measures study primarily consists of the calculated scores from constructs asked about during the interview, but the individual scale items were withheld at that time. These additional datasets contain those individual items plus the calculated scores. These variables are typically consistent across the waves that the scale was asked about during the course of the entire project. Most of the files contain variables from all four waves of data collection. The table in the front of the User Guide will list which waves are present in each data file.

The Pathways to Desistance study was a multi-site study that followed 1,354 serious juvenile offenders from adolescence to young adulthood in two locales between the years 2000 and 2010. Enrolled into the study were adjudicated youths from the juvenile and adult court systems in Maricopa County (Phoenix), Arizona (N=654) and Philadelphia County, Pennsylvania (N=700).

The Release data portion of the Pathways study contains information from 1,130 interviews ("release interviews") reflecting the youths' perceptions regarding various aspects of the residential experience and institutional environment (e.g., accounts of program operations and services provided, ratings regarding the participant's feelings of his or her safety in the facility). The release interview was conducted within 30 days prior to or after release from a facility and in a separate session apart from the time point interview. This was done to minimize the burden on the research participant and to ensure adequate attention to institutional ratings. The restricted time period within which to conduct the release interview reduced the likelihood that intervening events and experiences would skew the participant's recall of the stay.

Study participants could contribute more than one release interview, depending upon the number of institutional placements he/she had over the seven-year follow-up period. The current release data reflects ratings from 686 unique individuals. It should be recognized that not every institutional stay for every youth produced a release interview. On the basis of the number of reported institutional stays in the sample, it is estimated that a release interview was obtained for approximately 54 percent of the total number of residential stays experienced by study participants. Release interviews were missed if the research interviewer was not aware of the institutional stay (e.g. it occurred between time point interviews) or if the interviewer only became aware of the institutional stay at a point that was too late to schedule a release interview within the required window surrounding the release date.

The 686 individuals reflected in the release data represent 51 percent of the Pathway study participants (n=1,354) and 56 percent of Pathways participants who had a least one institutional stay (n=1,234; 120 Pathways youths had no institutional stays). On average, these 686 youths had 1.6 interviews. The number of interviews per unique person ranges from one to eight.

The current Release Measures study primarily consists of the calculated scores from constructs asked about during the interviews, but the individual scale items were withheld at that time. This study contains those individual items plus the calculated scores.

The Pathways to Desistance study was a multi-site study that followed 1,354 serious juvenile offenders from adolescence to young adulthood in two locales between the years 2000 and 2010. Enrolled into the study were adjudicated youths from the juvenile and adult court systems in Maricopa County (Phoenix), Arizona (N=654) and Philadelphia County, Pennsylvania (N=700).

Respondents were enrolled and baseline interviews conducted from November 2000 to January 2003. Follow-up interviews were then scheduled with the respondents at 6, 12, 18, 24, 30, 36, 48, 60, 72 and 84 months past their baseline interview.

The enrolled youth were at least 14 years old and under 18 years old at the time of their committing offense and were found guilty of a serious offense (predominantly felonies, with a few exceptions for some misdemeanor property offenses, sexual assault, or weapons offenses).

The baseline interview was conducted within 75 days of the youth's adjudication hearing. For youths in the adult system, the baseline interview was conducted within 90 days of either (a) the decertification hearing in Philadelphia, a hearing at which it is determined if the case will remain in adult court or if it will be sent back to juvenile court; or (b) the adult arraignment hearing in Phoenix, the point in the Arizona adult system at which charges have been formally presented.

The aims of the investigation were to identify initial patterns of how serious adolescent offenders stop antisocial activity, to describe the role of social context and developmental changes in promoting these positive changes, and to compare the effects of sanctions and interventions in promoting these changes. The larger goals of the Pathways to Desistance study were to improve decision-making by court and social service personnel and to clarify policy debates about alternatives for serious adolescent offenders. The study relied primarily on self-report information from study participants.

Each wave of data collection covered six domains: (1) background characteristics (e.g., demographics, academic achievement, psychiatric diagnoses, offense history, neurological functioning, psychopathy, personality), (2) indicators of individual functioning (e.g., work and school status and performance, substance abuse, mental disorder, antisocial behavior), (3) psychosocial development and attitudes (e.g., impulse control, susceptibility to peer influence, perceptions of opportunity, perceptions of procedural justice, moral disengagement), (4) family context (e.g., household composition, quality of family relationships), (5) personal relationships (e.g., quality of romantic relationships and friendships, peer delinquency, contacts with caring adults), and (6) community context (e.g., neighborhood conditions, personal capital, and community involvement). Information about the measures used to capture this information can be found on the Pathways to Desistance website.

The Pathways to Desistance study was a multi-site study that followed 1,354 serious juvenile offenders from adolescence to young adulthood in two locales between the years 2000 and 2010. Enrolled into the study were adjudicated youths from the juvenile and adult court systems in Maricopa County (Phoenix), Arizona (N=654) and Philadelphia County, Pennsylvania (N=700).

Respondents were enrolled and baseline interviews conducted from November 2000 to January 2003. Follow-up interviews were then scheduled with the respondents at 6, 12, 18, 24, 30, 36, 48, 60, 72 and 84 months past their baseline interview.

The enrolled youth were at least 14 years old and under 18 years old at the time of their committing offense and were found guilty of a serious offense (predominantly felonies, with a few exceptions for some misdemeanor property offenses, sexual assault, or weapons offenses).

Each wave of data collection covered six domains: (1) background characteristics (e.g., demographics, academic achievement, psychiatric diagnoses, offense history, neurological functioning, psychopathy, personality), (2) indicators of individual functioning (e.g., work and school status and performance, substance abuse, mental disorder, antisocial behavior), (3) psychosocial development and attitudes (e.g., impulse control, susceptibility to peer influence, perceptions of opportunity, perceptions of procedural justice, moral disengagement), (4) family context (e.g., household composition, quality of family relationships), (5) personal relationships (e.g., quality of romantic relationships and friendships, peer delinquency, contacts with caring adults), and (6) community context (e.g., neighborhood conditions, personal capital, and community involvement). Information about the measures used to capture this information can be found on the Pathways to Desistance website.

The current Subject Measures study primarily consists of the calculated scores from constructs asked about during the interview, but the individual scale items were withheld at that time. These variables are typically consistent across the waves that the scale was asked about during the course of the entire study. Most of the files contain variables from all 11 waves of data collection. The table in the front of the User Guide will list which waves are present in each data file.