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Education & Training: Accessing Data

Activities supported by the Center

Rehabilitation Dataset Directory

Rehabilitation Dataset Directory screen capture of websiteThe Rehabilitation Dataset Directory is designed to assist rehabilitation researchers identify potential secondary data sources.


Rehabilitation Cross-Dataset Variable Catalog

Rehabilitation Dataset Directory website screen captureBrowse or search the Rehabilitation Research Cross-Dataset Variable Catalog for detailed variable level rehabilitation relevant information.

ADDEP

Archive of Data on Disability to Enable Policy and research (ADDEP) screen capture of websiteThe Archive of Data on Disability to Enable Policy and research (ADDEP) is an initiative to build a repository of data on disability and rehabilitation with the mission to improve and enable research.

Edu Training

screen capture from webinar Tools for Finding Disability and Rehabilitation Related Data

Research tools for exploring national-survey and administrative data

Secondary datasets such as national surveys and administrative data are valuable resources for testing hypotheses and generating national-level statistics about disability and rehabilitation related-issues. Unfortunately, it can be difficult to identify what datasets are available and what data are most appropriate for addressing a specific research interest.

This presentation introduces two innovative web-based resources designed to help researchers learn:

- What datasets related to disability and rehabilitation are out there?
- What topics are covered in each dataset?
- What are the dataset strengths and limitations?
- How do I access the datasets?
- How to link to the University of Michigan’s Archive of Data on Disability to Enable Policy and Research (ADDEP)

The Rehabilitation Dataset Directory  is a browse-able/searchable database providing an overview, description, sample and other pertinent information for nearly 60 datasets. The Rehabilitation Research Cross-dataset Variable Catalog allows the exploration of variables organized by topics (including disability and health conditions, healthcare, health behaviors and more) simultaneously across 6 major datasets.

CLDR/Cornell Webinar, May 5, 2017 - Presenters: William Erickson and Sarah Von Schrader, K. Lisa Yang and Hock E. Tan Institute on Employment and Disability, Cornell University.

Users Guide: TBI

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

SDHI

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

User Guide: Disability Statistics from the American Community Survey

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
Employment and Disability Institute (EDI) Project Team:
Susanne Bruyère, PhD, CRC, Director of EDI William Erickson, Research Specialist Arun Karpur, Extension Faculty

screen capture of slide 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


Additional Resources

Edu Training

va-open-data 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.
2016 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.
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.
Making Changes to Your CMS Approved Study

Making Changes to Your CMS Approved Study - Amendment Requests

ResDAC Webinar - November 27, 2012

Researchers may want to make changes to their CMS-approved study which requires an amendment request to the Data Use Agreement (DUA).

This Webinar highlights the different types of amendment requests, the request process, the required documentation, and the CMS approved process.
Student Requests for CMS Research Identifiable Data

Student Requests for CMS Research Identifiable Data

ResDAC Webinar - November 15, 2012

CMS research identifiable data can be used by students for dissertation and thesis work. This Webinar will review the specific requirements for RIF data requests when made by students.


Websites

  • 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.
  • 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.

The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University, and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).