PARTNERS: Program to Advance Research and Transdisciplinary TraiNing in the CarE of PeRsons with Down Syndrome

SUMMARY Medical care advances have extended life expectancy in individuals with Down Syndrome [DS]1, but substantial gaps in our understanding of the underpinnings, emergence, progression, and intersection of co- occurring conditions in DS hamper surveillance and management recommendations. A major obstacle to addressing these gaps is the limited availability of a trans-disciplinary, collaborative work force with expertise and practical knowledge of working in the clinical research setting with individuals with ability differences including persons with DS. The goal of this trans-disciplinary training program (PROGRAM TO ADVANCE RESEARCH AND TRANSDISCIPLINARY TRAINING IN THE CARE OF PERSONS WITH DOWN SYNDROME, PARTNERS) is to foster the development of a new generation of investigators from diverse disciplines and backgrounds to pursue research in youth and adults with DS. This program will pursue a “whole-person” curriculum that considers clinical, social, legal, ethical, and research issues and perspectives related to persons with DS. These efforts are intended to supplement ongoing training for health professional and graduate students, medical residents, post-doctoral fellows, and early-career investigators. To achieve this goal, training will include a week-long in-person short course at the Children's Hospital of Philadelphia and will be supplemented by on-line materials and a year-long, monthly one-hour virtual meetings and mentorship. The week-long course will consider 1) DS and its related co-occurring conditions, 2) ethical, social, and legal issues surrounding research with the vulnerable population of persons with DS, 3) engagement with patients with DS and caregivers of diverse backgrounds, 4) strategies for managing data (REDCap) and pursuing scientific rigor, and 5) special considerations surrounding data analyses and interpretation; when possible, hands-on experiences will be included. Additionally, 1) discussions with youth and adults with DS and their caregivers and 2) small group sessions to provide feedback on emerging and ongoing DS-specific research projects as well as career development will be included. Each presentation will highlight knowledge gaps in DS research and existing datasets (including the NIH INCLUDE Data Coordinating Center) that can be leveraged to address such gaps. The occurring disabilities, in their commitment faculty include 1) clinicians with expertise in care fo individuals with DS and their co- onditions, 2) clinica l researchers conducting research in youth and adults with DS or intellectual 3) experts in huma rights and disabilities, 4) established mentors and 5) physicians with expertise medical education as well as clinica research staff with hand-on experienc engaging individuals with DS and caregivers/support providers. Together these instructors have the varie expertise, resources, and to training the next generation of investigators to advance research in persons with DS. R25 PARTNERS r c n , l e d