Accessing Data
Education & Training Accessing Data
Archiving and Sharing Data
Other Links & Resources
Activities Supported by the Center
Rehabilitation Dataset Directory
The Rehabilitation Dataset Directory is designed to assist rehabilitation researchers identify potential secondary data sources.
Rehabilitation Cross-Dataset Variable Catalog
Browse or search the Rehabilitation Research Cross-Dataset Variable Catalog for detailed variable level rehabilitation relevant information.
ADDEP
The Archive of Data on Disability to Enable Policy and research is an initiative to build a repository of data on disability and rehabilitation with the mission to improve and enable research.
Edu Training
2020.05.21 - Webinar: Finding Disability and Rehabilitation Data and Repositories
Finding Disability and Rehabilitation Data and Repositories
Secondary datasets are valuable resources for testing hypotheses and generating meaningful statistics related to disability and rehabilitation. We will demonstrate two online resources designed to help researchers learn about:
Datasets related to disability and rehabilitation
Topics covered by different datasets
How to access the datasets
Tools to explore and analyze the data
Additional dataset resources and how you can share your own data
William Erickson, Sarah von Schrader
K. Lisa Yang and Hock E. Tan Institute on Employment and Disability
2019.03.27 - Webinar: Disability and Rehabilitation Data Resources: Tools for identifying and accessing survey and administrative data
Disability and Rehabilitation Data Resources: Tools for identifying and accessing survey and administrative data
Rehabilitation Dataset Directory is a browse-able/searchable database providing an overview, description, sample and other pertinent information for over 50 datasets.
ADDEP is a data repository that acquires, preserves, and disseminates research data on disability and rehabilitation providing researchers an interactive space to explore and analyze secondary data.
CLDR/Cornell/ADDEP Webinar, March 27, 2019 - Presenters: William Erickson and Sarah Von Schrader, K. Lisa Yang and Hock E. Tan Institute on Employment and Disability, Cornell University; Shane Redman, Archive of Data on Disability to Enable Policy and Research (ADDEP) Inter-university Consortium for Political and Social Research (ICPSR)
2017.01.31 - Video: Modernizing Survey Research Measures of Late-Life Disability
Modernizing Survey Research Measures of Late-Life Disability
Lefeber Winter Series on Aging at UTMB January 31, 2017
Presented by Alan Jette, PT, MPH, PhD
2016.11.10 - Webinar: Introduction to the Archive of Data on Disability to Enable Policy and research (ADDEP)
Introduction to the Archive of Data on Disability to Enable Policy and research (ADDEP) [slides]
ICPSR Webinar, November 10, 2016 - Presented by Alison Stroud and Jai Holt
2016.11.10 - Video: Big Data for Rehabilitation at the ASNR Annual Meeting
Big Data for Rehabilitation: Promises, Pitfalls and Future Potential
ASNR ANNUAL MEETING • NOVEMBER 10 – 11, 2016 • MARRIOTT MISSION VALLEY – SAN DIEGO, CA
Organized by Sook-Lei Liew, PhD, OTR/L & Steven Cramer, MD
A persistent challenge in rehabilitation research is the vast heterogeneity within clinical populations. This inter-individual variability makes it difficult to establish significance and reliably replicate findings of rehabilitation studies across smaller sample sizes. Large, diverse datasets (aka "big data"; e.g., n>1000) have the potential to drive rehabilitation research forward by providing the greater statistical power needed for robustly evaluating clinical hypotheses and validating findings from smaller studies. However, collecting, organizing, and analyzing such large amounts of data comes with a number of limitations and considerations. Here we present current applications of 'big data' approaches for rehabilitation research across both retrospective and prospective collections of behavioral, neuroimaging, and clinical outcomes data. In each talk, we provide a balanced approach to this topic, highlighting both the potential of 'big data' approaches for driving the rehabilitation field forward, as well as the challenges associated with properly implementing, analyzing and interpreting the results. In doing so, we aim to educate attendees about current methodologies and available tools for conducting big data analyses in rehabilitation. We also hope to provide a tempered, realistic view of the limitations of these approaches and ways to complement this approach with experimental approaches. While several of the applications presented here focus on stroke rehabilitation, we emphasize general methodologies and applications that can be related to many rehabilitation populations. Attendees will not only gain big picture insights into how large datasets can be used to further rehabilitation research, but they will also learn practical knowledge regarding what types of information are contained in various databases, how to access or contribute to them, and how to use these resources for their own questions and purposes.
Speakers: Steven Cramer, MD; Liam Johnson, PhD; Sook-Lei Liew, PhD, OTR/L; Keith Lohse, PhD; Kenneth Ottenbacher, PhD, OTR
2016.04.06 - Videos: Institute on Large Data and Data Sharing Research: Issues, Methods, and Opportunities
AOTA 2016 Pre-Conference Institute on Large Data and Data Sharing Research: Issues, Methods, and Opportunities
Ken Ottenbacher, PhD, OTR, and colleagues offered a pre-conference institute co-sponsored by The American Occupational Therapy Foundation (AOTF) and American Occupational Therapy Association (AOTA) at AOTA's national conference in Chicago on April 6th, 2016.
Kenneth Ottenbacher, PhD, OTR CLDR: Introduction & Analysis of Large Data
George Alter, PhD An Introduction to Data Sharing at ICPSR and the Archive of Data on Disability to Enable Policy and Research (ADDEP)
William Erickson, PhD Online Dataset Resources for Rehabilitation Researchers: DisabilityStatistics.org
Mary Khetani, PhD Leveraging National Early Intervention Longitudinal Study (NEILS) Data to Design a New Pediatric Assessment
Tim Reistetter, PhD, OTR Variation in Inpatient Rehabilitation Outcomes Among Medicare Beneficiaries
Tracy Mroz, PhD Use of Home Health Services among High-Risk Rural Medicare Beneficiaries and Outcomes of Care Natalie Leland, PhD Accidental Falls During Post-Acute Care: Do Patients Achieve Successful Community Discharge After This Adverse Event?
Amol Karmarkar, PhD Panel Discussion: Finding funding, resources, creating infrastructure, and developing collaborations for large data research
2013.05.01 - Users Guide: Traumatic Brain Injury Model Systems National Database
Users Guide: Traumatic Brain Injury Model Systems National Database
May 2013 - Arun Karpur, Employment and Disability Institute , Cornell University
University at Texas-Medical Branch Project Team:
Ken Ottenbacher, Ph.D., OTR (Principal Investigator) James E. Graham, Ph.D. Amol Karmarkar, Ph.D.
Employment and Disability Institute (EDI) Project Team:
Susanne Bruyère, Ph.D., CRC, Director of EDI William Erickson, Research Specialist Arun Karpur, Extension Faculty
2013.01.18 - Slides: New Research Tools for Exploring Disability, Rehabilitation-Related National-Survey and Administrative Claims Data
Slides: New Research Tools for Exploring Disability, Rehabilitation-Related National-Survey and Administrative Claims Data
CLDR/Cornell Webinar, January 18, 2013 - Presented by William Erickson and Sarah von Schrader, Employment and Disability Institute, Cornell University
2012.12.13 - Webinar: Secondary Datasets in Disability and Health: Tools for Researchers Using US Datasets
Webinar: Secondary Datasets in Disability and Health: Tools for Researchers Using US Datasets
National survey and administrative datasets continue to be a rich resource for generating national-level statistics for people with disabilities in the United States. Heterogeneous definitions of identifying individuals with disabilities as well as the varying sampling framework limit the use of secondary datasets.
SDHI Webinar, December 13, 2012 - Presented by Arun Karpur, Research Faculty, School of Industrial & Labor Relations Employment & Disability Institute, Cornell University and William Erickson, Research Specialist Employment & Disability Institute, Cornell University
2012.06.01 - Users Guide: Disability Statistics from the American Community Survey (2008 Forward)
Users Guide: Disability Statistics from the American Community Survey (2008 Forward)
June 2012 - University at Texas-Medical Branch Project Team:
Ken Ottenbacher, PhD, OTR (Principal Investigator) Amol Karmarkar, PhD
Susanne Bruyère, PhD, CRC, Director of EDI William Erickson, Research Specialist Arun Karpur, Extension Faculty
2011 - Slides: Security, Privacy, and Ethical Issues in Database Research
Slides: Security, Privacy, and Ethical Issues in Database Research
UTMB/CRRLD (r24) Presentation 2011 - Presented by Linda S. Elting, Dr.P.H, University of Texas MD Anderson Cancer Center
2018.12.20 - Gateway to Global Aging
The Gateway to Global Aging Data is an NIA-funded website at the University of Southern California that enables longitudinal and cross-national comparisons of the health, social, and economic status of older people. Read NIA Blog post, Open the door to a world of data by Dr. Partha Bhattacharyya Partha.
2018.02.13 - Annual Disability Statistics Compendium
The Annual Disability Statistics Compendium is a web-based tool that pools disability statistics published by various federal agencies together in one place. When working on legislative and other matters relating to persons with disabilities, the Compendium will make finding and using disability statistics easier.
2013.01.04 - Public Health Information and Data Tutorial
The Public Health Information and Data Tutorial provides instruction for members of the public health workforce on issues related to information access and management.
2013 - U.S. Department of Veterans Affairs Open Data Portal
New Department of Veteran Affairs Open Data Portal
Data, APIs, tools and resources that can be used to develop web and mobile applications, design data visualizations, and create stories directly from VA resources.
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Data and Specimen Hub (DASH) NICHD DASH is a centralized resource for researchers to store and access data from NICHD-funded research studies to use for secondary research. It serves as a mechanism for NICHD-funded extramural and intramural investigators to share de-identified research data from studies in accordance with the NIH Data Sharing Policy and the NIH Genomic Data Sharing Policy.
Federal Interagency Traumatic Brain Injury Research (FITBIR) informatics system The Federal Interagency Traumatic Brain Injury Research (FITBIR) informatics system was developed to share data across the entire TBI research field and to facilitate collaboration between laboratories, as well as interconnectivity with other informatics platforms.
Health and Medical Care Archive (HMCA) The Health and Medical Care Archive (HMCA) is the data archive of the Robert Wood Johnson Foundation (RWJF), the largest philanthropy devoted exclusively to health and health care in the United States.
National Information Center on Health Services Research and Health Care Technology (NICHSR) Improving the collection, storage, analysis, retrieval, and dissemination of health services research.
PCORnet, the National Patient-Centered Clinical Research Network An innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI) designed to make it faster, easier, and less costly to conduct clinical research than is now possible by harnessing the power of large amounts of health data and patient partnerships.
Research Data Assistance Center (ResDAC) Improving the collection, storage, analysis, retrieval, and dissemination of health services research.
Vivli Center for Global Clinical Research Data Vivli is a not-for-profit entity that will promote global clinical trial data sharing through the establishment of a data platform where data can be hosted, searched, and accessed.