OCTOBER 6, 2009 - The National Institutes of Health just announced a second phase of funding for the Rare Diseases Clinical Research Network (RDCRN). This research award will be funded over the next five years. Originally launched in 2003, the RDCRN addresses rare diseases through consortia and supports related to natural history, epidemiology, diagnosis, and treatment.
The HHT portion of the study will include 13 HHT Centers participating for 5 years. 875 patients will be recruited through HHT Centers and the HHT Foundation Conferences. The study's aims will:
-include demographics, symptomatology, cerebral angioarchitecture, other organ involvement
- Determine risk factors for hemorrhage HHT BAVM.
- HHT Brain AVM's will be compared against sporadic Brain AVM's
- Determine high risk interventional therapy
-Investigate the use of genetic mutations as potential marker for hemorrhage risk (Endoglin, Alk 1)
The full announcement of the award can be found: