We have a large population of EB patients who follow-up at least annually or every 6 months for care and so are able to provide useful data regarding their overall health and specialty evaluation. Over the past year, our fellow has spent considerable time updating our database and providing regulatory oversight for IRB modifications and submission, especially with the impending data transfer on RedCap. She commits 15-20% of her time to upkeep this registry, attending EB teleconference, and contributing feedback for new EB medical note template.
|Effective start/end date||7/29/16 → 6/30/17|
- EB Research Partnership Inc. (Agmt Signed 12/15/16)