RDCRN Database for SSADHD Patients

The SSADH Association has joined forces with an organization known as the Rare Diseases Clinical Research Network (RDCRN) and The Sterol and Isoprenoid Research (STAIR) Consortium. Our goal in teaming up with RDCRN and STAIR is to raise awareness, leverage research, explore other funding sources and foster internships.

At this time The RDCRN data management and coordinating center changed hands about 2 years ago from University of South Florida to Cincinnati Children’s Hospital and they are working through the process of getting the new, revised RDCRN contact registry up and running.   As soon as the new registry is available, the link will be available on this page.

So at this time they are holding off on taking registrations.

However, SSADH was one of the largest disorders represented by this group which significantly strengthened our position within the consortium, improve STAIR’s long-term funding outlook and ensures lasting support to SSADH clinical research.

RDCRN and STAIR is a consortium representing a collaborative group of investigators along with their hospitals, clinics, and academic medical centers along with the National Institutes of Health, patient advocacy groups (PAGs), and clinical research programs.

Please let me know if you have any questions.

SSADH Association
Carolyn Hoffman
498 Lillian Court
P.O. Box 180622
Delafield, WI 53018 USA
Phone: (262) 646-5133
choffmanwi@aol.com