University of Michigan Initiative on Rare Disease
Disorders of Sex Development (DSD) Research and Quality Improvement Symposium

In April, 2009, Accord Alliance co-hosted a successful Research and Quality Improvement Symposium with the University of Michigan Medical School, part of the University’s Initiative on Rare Disease Research. The goal of the Symposium was to create a vision for research on caring for persons with DSD and their families that will guide recommendations for an interdisciplinary research and learning agenda. One important aspect of the symposium was the active participation of over sixty researchers and clinicians, advocate representatives, patients, and family members. Together we developed consensus on recommendations for research and collaborative learning to improve care and outcomes for all persons affected by DSD. The symposium helped establish a national network of stakeholders committed to working together to champion research and learning for DSD.

Symposium proceedings were presented at a poster session by Accord Alliance and The University of Michigan at the LWPES/ESPE 8th Joint Meeting - Global Care in Pediatric Endocrinology. We received encouraging and exciting feedback from conference attendees on our approach to engaging stakeholders in establishing and furthering a DSD research and quality improvement agenda.

View the DSD Research and Quality Improvement Symposium Poster (pdf)

Below, you can review the presentations used during the Symposium to generate group conversations.

Perspective of Rare Diseases Activity	Informed Consent	Psychological Outcomes
Shared Decision Making	Interdisciplinary Team Care