Pilot Study of a Novel Maintenance-Free Remote Wear Time Monitor for Cranial Remolding Orthoses (ICPSR 310131)
The study team has developed a novel Remote Temperature Monitoring (RTM) sensor which automatically uploads temperature data to the Cloud and integrates with both a clinician’s dashboard and an app on the caregiver’s cell phone to allow for real-time monitoring of CRO use. This is the first study to attempt to validate the RTM sensor in a clinical setting.
A systematic discourse analysis of how U.S. political leaders frame disability: Implications for students with disabilities (ICPSR 307656)
This study examined how U.S. political leaders publicly framed disability during calendar year 2025, using a systematic discourse analysis of public statements and federal legislation. It also examined how this discourse was reflected in federal education policy, including statements by the Secretary of Education and education-related bills.
The study analyzed 121 public statements about people with disabilities made by White House and Cabinet officials, and 32 federal bills introduced in 2025 that could affect the rights, services, or educational opportunities of individuals with disabilities. Statements were identified through a two-stage process that combined a custom Python-based web-scraping tool, which extracted verbatim, attributed quotations from news articles, press releases, interview transcripts, official speeches, and social media posts using the OpenAI GPT-4 API, with manual verification searches conducted in ChatGPT Plus and Perplexity AI Pro. Federal bills were identified through Congress.gov. All statements were reviewed by the authors to confirm accuracy, attribution, and date. Each statement and bill was independently scored by two human coders and by GPT-4 using an author-developed four-point rubric grounded in the social and human rights models of disability, ranging from 1 (dehumanizing) to 4 (affirming).
The data contain one record per statement, including the speaker's name and title, date, verbatim quotation, source, context, an analysis of the framing, a score from 1 (dehumanizing) to 4 (affirming), and the rationale for the score. The bills data are available on the project website and are not included in this deposit.
The study was approved by the university Institutional Review Board (March 2025) and was preregistered on the Open Science Framework (https://osf.io/hbfe5/).
Discontinuation of Disease Modifying Therapies (DMTs) in Multiple Sclerosis (MS), United States, 2017-2020 (ICPSR 39186)
Targeted Interventions to Prevent Chronic Low Back Pain in High Risk Patients: A Multi-Site Pragmatic Randomized Controlled Trial (TARGET Trial), 4 U.S. cities, 2016-2019 (ICPSR 38145)
The TARGET (Targeted Interventions to Prevent Chronic Low Back Pain in High-Risk Patients) Trial was a primary care-based, multisite, cluster randomized, pragmatic trial comparing guideline-based care (GBC) to GBC + referral to Psychologically Informed Physical Therapy (PIPT) for patients presenting with acute lower back pain (LBP) and identified as high risk for persistent disabling symptoms. Chronic lower back pain (LBP) is defined as a response of "more than three months" to question 1, and a response of "half the days or more than half the days" in the past 6 months to question 2. See Appendix 1 for the LBP Questionnaire in the Protocol report.
Study sites included primary care clinics within each of four geographical regions in the United States, with clinics randomized to either GBC or GBC+PIPT. Acute LBP patients at all clinics were risk stratified (high, medium, low) using the STarT Back Tool. The primary outcomes were the presence of chronic LBP and LBP-related functional disability determined by the Oswestry Disability Index at 6 months. Secondary outcomes were LBP-related processes of health care and utilization of services over 12 months, determined through electronic medical records.
Study enrollment began in May 2016 and concluded in June 2018. The trial was powered to include at least 1,860 high-risk patients in the cluster-randomized controlled trial cohort. A prospective observational cohort of approximately 6,900 low and medium-risk acute LBP patients was enrolled concurrently.
This data collection contains a single data file with 223 variables and 9,730 cases. The number of respondents at each of the study locations were:
- Boston Medical Center: 997 respondents
- Intermountain Health (Salt Lake City): 2,094 respondents
- Johns Hopkins University (Baltimore): 1,615 respondents
- University of Pittsburg Medical Center: 5,024 respondents
Boston Rehabilitative Impairment Study of the Elderly (Boston RISE), 2009-2015 (ICPSR 37045)
Child Care and Children with Special Needs: Challenges for Low Income Families, Maine, United States, 2002-2005 (ICPSR 27001)
This project was a mixed-method, multi-level study of low income families of children with special needs and the system which served them, focusing primarily on child care, employment, and balancing work and family. This approach included an analysis of existing national and state-level data sets, statewide surveys of parents and child care providers, and a field study to look at these issues at the local level in three selected communities in the state of Maine: Portland, Lewiston/Auburn, and Presque Isle. While the primary focus was on access to child care, this project also looked at the related issues of welfare reform, the impact of work force participation on having a child with special needs, and the issue of coordination of early intervention services with the child care system. The goal was to understand better the issues facing low income families with special needs children across the programs and policies affecting their employment, access to child care, and meeting the special needs of their children. In the first year of the study, qualitative research was conducted to learn directly from parents about their experiences. In the second and third years, a field study of three communities was conducted as well as statewide surveys and analysis of national data bases to supplement the data collected in the first year. This data collection is comprised of the two quantitative data files produced during the second and third years of the study which are described in more detail below.
Child Care Provider Survey: The Child Care Provider Survey was a statewide survey of child care providers selected at random from the list of licensed providers in Maine given by the state licensing agency. Questions focused on the perspective of child care providers on the issues of access and inclusion that parents raised.
Parent Survey: The Parent Survey was a statewide survey of parents and children aged 0-18 years with diagnosed special needs (enrolled in Maine Care - Katie Beckett and Title V eligibility groups - and Child Development Services early intervention caseloads). Questions focused on child care utilization and work experiences in relation to children with special needs.
Researchers interested in information about the qualitative data should contact the Child Care and Children with Special Needs Project Web site.
Functional Independence in Children at a Pediatric Clinic in Guanajuato, Mexico, 2004-2013 (ICPSR 37068)
This study sought to evaluate the functional independence in children at a Centers for Pediatric Rehabilitation Teleton (CRIT) facility in Guanajuato, Mexico through the use of the WeeFIM Instrument (0-3 Module). The dataset in this collection was generated in May 2013 from electronic health records for secondary analysis of de-identified data. The goal of CRIT, that this research sought to evaluate, was to improve social integration for children with disabilities in Mexico through comprehensive rehabilitation services, including physical therapy, occupational therapy, neurotherapy, speech therapy, physical and rehabilitation medicine, psychology, social integration, and school for parents.
The collection includes one dataset (35 variables, 5,993 cases). Demographic variables included in the collection: Age, gender, and city of residence.
Spinal Cord Injury Rehabilitation Study, United States, 2007-2010 (ICPSR 36724)
Wheelchair Tiedown and Occupant Restraint System (WTORS) Activity in Paratransit Vehicles, 2012 (ICPSR 36970)
Language Development of Non-verbal Children Age 3 Years through 7 Years, 2007 to 2012 [Kansas City Metro Area] (ICPSR 36472)
The Language Development of Non-verbal Children Age 3 Years through 7 Years in the Kansas Metro Area is one of the three projects in the Communication of People with MR, 2006 to 2012 Series, which focuses on identifying participant variables that predict success in increasing communication skills of individual with intellectual disabilities. Data for Dataset 1 of this study were collected to illustrate how acquisition of symbolic communication using Voice Output Communication Aid (VOCA) affects the development of successful communication exchanges. For the data collection of Dataset 1, children were recruited by contacting school districts in and near the Kansas City metropolitan area, specifically, in Topeka, Kansas, and Wichita, Kansas. Teachers and speech-language pathologists were asked to nominate any children meeting specific criteria. The 93 children who were enrolled were administered the Mullen Scales of Early Learning and the Preschool Language Scale. A structured play assessment was also administered.
Subsequently, data for Dataset 2 was collected to analyze and compare 19 Spanish-speaking children to the original sample. Both data files contain the results of Complexity of Communication Scale, a measure developed by the Communication of People with MR project.
Young Children with Physical Disabilities, 2007 to 2012 [Seattle, Washington] (ICPSR 36516)
The Young Children with Physical Disabilities Seattle, Washington study is one of the three projects in the Communication of People with MR, 2006 to 2012 Series, which focuses on identifying participant variables that predict success in increasing communication skills of individual with intellectual disabilities. The study data were collected to show that triadic eye gaze for joint attention can be established in very young children with moderate or severe motor impairments.
Dataset 1 contains 48 cases. Most cases include data on results of the Complexity of Communication Scale, a measure developed by the Communication of People with MR project. In addition, Dataset 1 contains data on a Functional Assessment, the Bayley Scales of Infant and Toddler Development, the Mullen Scales of Early Learning and the Communication and Symbolic Behavior Scales.
Dataset 2 contains data on Triadic Eye Gaze and Coordinated Joint Attention. Participants for Dataset 2 were convenience sampled from birth-to-three centers in Seattle, Washington. There were 18 participants, children with severe physical disabilities between 10 and 24 months of age, who were randomly assigned to one of two groups: (a) an experimental treatment group ( n = 9) or (b) a control group ( n = 9).
American Community Survey (ACS): Public Use Microdata Sample (PUMS), 2009 (ICPSR 33802)
American Community Survey (ACS): Public Use Microdata Sample (PUMS), 2008 (ICPSR 29263)
RAND Center for Population Health and Health Disparities (CPHHD) Data Core Series: Disability, 2000 [United States] (ICPSR 27862)
National Health Interview Survey, 2007 (ICPSR 27201)
National Health Interview Survey, 2008 (ICPSR 27341)
National Health Interview Survey, 2006 (ICPSR 20681)
National Health Interview Survey, 2009 (ICPSR 28721)
American Community Survey (ACS): Three-Year Public Use Microdata Sample (PUMS), 2005-2007 (ICPSR 25042)
American Community Survey (ACS): Public Use Microdata Sample (PUMS), 2007 (ICPSR 24503)
American Community Survey (ACS): Public Use Microdata Sample (PUMS), 2003 (ICPSR 4117)
American Community Survey (ACS): Public Use Microdata Sample (PUMS), 2006 (ICPSR 22101)
The Survey of Health, Ageing and Retirement in Europe (SHARE) -- Israel, 2005-2006 (ICPSR 22160)
The Survey of Health, Ageing and Retirement in Europe (SHARE) is a multidisciplinary and cross-national database of micro data on health, socio-economic status and social and family networks of individuals aged 50 or over which was designed after the role models of the United States Health and Retirement Study (HRS) and the English Longitudinal Study of Ageing (ELSA).
SHARE-Israel was added to the collection during 2005 and 2006 and required a complex adaptation of the SHARE survey instruments for implementation in Israel. In order to access the three major population groups that make up Israeli society, veteran Jewish-Israelis, Arab-Israelis and new immigrants from the former Soviet Union after 1989, it was necessary to translate the CAPI questionnaire and the drop off questionnaire into Hebrew, Arabic and Russian.
Data collected include health variables (e.g., self-reported health, physical functioning, cognitive functioning, health behavior, use of health care facilities), psychological variables (e.g., psychological health, well-being, life satisfaction), economic variables such as (current work activity, job characteristics, opportunities to work past retirement age, sources and composition of current income, wealth and consumption, housing, education), and social support variables (e.g., assistance within families, transfers of income and assets, social networks, volunteer activities).
Two physical performance measures were also employed. The first was grip strength, the respondent's maximum handgrip strength measured by means of a dynamometer. The second physical performance measure was walking speed, which was asked only of persons aged 75 and older. This physical measurement involved asking the respondent to walk a certain distance and measuring the time it took for the respondent to complete the task.
Unique to SHARE-Israel were questions in the drop-off questionnaire regarding trauma. Respondents were asked about difficult life events that they had experienced and the degree to which they were affected by them. The events were drawn from the following areas (1) having personally suffered injury in war, in a terrorist attack, a grave illness or accident, (2) having witnessed injury or death in war, in a terrorist attack, and/or in an accident or crime, (3) having been a victim of crime, abuse, sexual harassment and/or severe economic adversity, (4) having had a close person injured or lost due to war, a terrorist attack, accident or grave illness, (5) loss of spouse and/or offspring, and (6) having provided or received long term care due to functional disability. A separate inventory chronicled respondents' exposure to the Holocaust.
Also included in the drop-off questionnaire were questions regarding pension reform: which addressed respondents' awareness of the legislated delay in the age of eligibility for retirement pension in Israel, (for men, age 67 and for women, age 64). It also inquired about implications of the change in pension age, information regarding personal plans for employment or retirement in light of the change, and sources of income that would be used to bridge the period between retirement and receipt of pension, if early retirement was contemplated. Full details regarding SHARE can be located at the SHARE Web site.