Project Description:
This project was initially included as a pilot project for our UCEDD under our current UCEDD funding. It has evolved into a national initiative, approved and supported by the National Clinical and Translational Science Awards (CTSA) program of NCATS, that involves a collaboration between the Integration Across the Lifespan Enterprise Committee of the CTSA Network and the Association of University Centers on Disabilities (AUCD) and its member UCEDD, LEND, and IDDRC programs. The purpose of the program is to develop a toolkit for researchers and individuals with lived disability experience on topics to engage individuals with lived disability experience in all aspects of the research process- study concept, hypotheses, design, measurement selection, participant recruitment and ongoing informed consent, data analysis and interpretation, and manuscript preparation and publication. A Working Group consisting of members of the CTSA network, UCEDDs, LENDs, IDDRCs, and AIR-Ps, individuals with lived experience, and individuals with lived experience who are researchers has been convened. The Working group will conduct a needs assessment, create a toolkit of resources, and publish at least one paper resulting from the project. The Mailman Center project described in our UCEDD plan will serve as a pilot laboratory for concepts and toolkit components of the Working Group.
Target Audience:
Students/Trainees (long or intermediate trainees), Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English
