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CTDA 1013: Posttraumatic Stress in Children Age 6 to 15 Hospitalized for Traumatic Brain Injuries, Australia, 2004-2008 (ICPSR 39602)

Released/updated on: 2026-05-19
Geographic coverage: Australia
Time period: 2004-01-01--2008-12-31

This study prospectively assessed psychological and cognitive sequelae of traumatic brain injury (TBI) in children. Multiple factors may influence children's functioning following head injury including injury severity, pre-injury child factors, and family factors. Overall study aims were to describe the relationships between these factors and children's recovery in the eighteen months following their injury, to examine the relationship between children's cognitive impairments post injury and psychological distress related to the injury event, and to examine the role of PTSD in children's recovery from TBI.

The study enrolled children age 6 to 15 admitted to hospital after an accident resulting in mild to severe TBI, and one parent per child. Children and parents completed research assessments within 2 months of the accident, and at 3, 6, 12, and 18 months post-accident. Child health and behavior, health-related quality of life, parenting, and parent posttraumatic stress were assessed at all time points, and child posttraumatic stress symptoms were assessed at 3, 6, 12, and 18 months.

Curated
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Anki for Spanish Speakers with Aphasia, United States, 2022-2023 (ICPSR 39700)

Released/updated on: 2026-05-06
Geographic coverage: United States
Time period: 2022-01-01--2023-12-31

This study aimed to address the communication needs of Spanish speakers with aphasia by helping them learn scripted sentences using open-source software. The core of learning scripted sentences is to support people with aphasia to learn daily-life sentences to participate in their communities. This study had two specific aims.

First, to develop a scripted sentence treatment repository in collaboration with stakeholders through an iterative design process. Scripted sentences were designed with and for Spanish speakers with aphasia to ensure that treatment resources were linguistically and culturally appropriate.

Second, to examine the acceptability, usability, and preliminary efficacy of scripted sentence training delivered via open-source software. Participants completed baseline, treatment, and follow-up phases (~13 sessions each), learning a set of sentences (~45 each) from the repository in a single-subject multiple baseline design. Participants and their care partners were interviewed regarding their perceptions of acceptability, usability, and preliminary efficacy. Participants also completed the Client Satisfaction Questionnaire-8 and the System Usability Scale.

Self-published

Everyday Needs Assessment for Cognitive Tasks (ENACT) Study (ICPSR 221803)

Released/updated on: 2026-02-18
Time period: 2022-07-01--2025-03-31
The Everyday Needs Assessment for Cognitive Tasks (ENACT) study is a multi-site,longitudinal investigation that explores the daily challenges and support needs ofcommunity-dwelling older adults with cognitive impairment, including individuals withmild cognitive impairment, traumatic brain injury, and post-stroke cognitive impairment.By integrating in-depth qualitative interviews with quantitative assessments, the studyprovides a comprehensive picture of how cognitive challenges affect daily functioningand technology use. The dataset includes baseline and one-year follow-up data forpersons with cognitive impairment (PwCI) and baseline data for their care partners (CareP).
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Improving Transition from Acute to Post-Acute Care following Traumatic Brain Injury (BRITE), United States, 2018-2022 (ICPSR 39094)

Released/updated on: 2025-09-17
Geographic coverage: United States
Time period: 2018-01-01--2022-12-31

The BRITE study (Brain Injury Rehabilitation: Improving the Transition Experience) was a six-center, 1:1 randomized controlled pragmatic trial with masked outcome assessment that compared the effectiveness of two established approaches to managing transition from inpatient rehabilitation facility discharge to the next phase of care for individuals with moderate-to-severe traumatic brain injury (TBI). The two established transition methods were (1) a standardized version of existing discharge procedures used at all six sites and (2) a standardized remotely-delivered case management approach that extended beyond the point of discharge, based on the protocol used within the Veteran's Health Administration and enhanced with input from patient and family stakeholders. The sample was stratified by site and discharge location (skilled nursing facility vs. discharge to home/community) based on the relatively lower frequency of discharge to facility (22 percent across all six study sites in 2015) and the expectation of high impact of discharge destination on outcomes. When a caregiver was available for an enrolled patient, they were also approached for consent to be surveyed, with some patients having up to two caregivers enrolled to account for changes in primary caregiver.

The following key outcome domains were assessed: (1) ability of patients to participate in the home and community as independently as possible, (2) health-related quality of life, (3) access to appropriate healthcare and reduced emergent or urgent healthcare, and (4) caregiver outcomes. These outcomes were assessed at 3, 6, 9 and 12 months after discharge from inpatient care. Participants were also given the standard TBI Model Systems follow-up assessment one-year post-injury. Types of medical insurance coverage and satisfaction with healthcare were examined at 6 and 12 months post-discharge.

Self-published

2018 TBI Model System Collaborative: Characterization and Treatment of Chronic Pain after Moderate to Severe Traumatic Brain Injury (ICPSR 193506)

Released/updated on: 2025-01-03
Time period: 2018-09-30--2023-09-29
This is a multi-site, cross-sectional, observational study involving a total of 18 centers. Using the infrastructure of the TBIMS, this study will add new study measures at collaborative study sites and link this information with TBIMS Form I and II variables to address the study aims. Results from this study will provide a more detailed picture of the problem of chronic pain after TBI by examining the types of pain that occur after TBI, which may be multiple types of pain for a subset of individuals, as well as the frequency of comorbid conditions. Identifying extreme phenotypes, such as demographic, individual, and treatment factors associated with those who have chronic pain but have minimal interference compared to those who are significantly impacted by pain, will allow us to identify treatment targets (behavioral, cognitive, biological, and molecular) to advance a personalized medicine approach to treatment unlike any approach in TBI and chronic pain to date. Outcomes from this study will include educational materials on chronic pain and pain treatment to benefit patients, family members, clinicians, and policymakers. Data from this study will have a direct impact on clinical practice, informing future work, and promoting understanding of constituent factors in extreme phenotypes.
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Barriers and Facilitators to the Receipt of Treatment for Psychiatric Disturbances following Traumatic Brain Injury, United States, 2015-2016 (ICPSR 38039)

Released/updated on: 2021-06-09
Geographic coverage: United States
Time period: 2015-01-01--2016-12-31
The objective of the study was to explore perceptions of barriers and facilitators to diagnosis and receipt of treatment for neuropsychiatric disturbances (NPD) following traumatic brain injury (TBI) from the viewpoint of the healthcare provider, patient, and caregiver. The data comprise deidentified transcripts of ten semi-structured interviews conducted with healthcare providers who treat individuals with TBI and four focus groups conducted among individuals aged 18 years and older with TBI who had been diagnosed with an NPD (primarily anxiety and depression). Participants in the semi-structured interviews included three neuropsychiatrists, a psychiatric nurse practitioner, two psychotherapists, a neurologist, an emergency department physician, an occupational therapist and a speech pathologist. Interviews were conducted by phone and lasted 40-50 minutes. The four focus groups comprised 23 individuals, of whom five were caregivers. Time since TBI ranged from 18 months to 15 years and levels of TBI severity ranged from mild to severe.
External data

The Traumatic Brain Injury Model Systems National Data and Statistical Center (ICPSR 36589)

Released/updated on: 2016-11-29

The Traumatic Brain Injury Model Systems National Data and Statistical Center (TBINDSC) located at Craig Hospital in Englewood, Colorado, is a central resource for researchers and data collectors within the Traumatic Brain Injury Model Systems (TBIMS) program. The primary purpose of the TBINDSC is to advance medical rehabilitation by increasing the rigor and efficiency of scientific efforts to longitudinally assess the experience of individuals with traumatic brain injury (TBI). The TBINDSC provides technical assistance, training, and methodological consultation to 16 TBIMS centers as they collect and analyze longitudinal data from people with TBI in their communities, and as they conduct research toward evidence-based TBI rehabilitation interventions.

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