NHLBI Approves National Registry of Patients with Aortic Dissection: People with the Marfan Syndrome will be a Focus

As this issue of Connective Issues[Winter 2004] went to press, the NMF learned that the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH), had just approved implementation of an initiative to establish a National Registry of Patients with Aortic Dissection. Further, NHLBI indicated that people with the Marfan syndrome will be a significant component of the registry. “NHLBI is pleased to work with the National Marfan Foundation. The collaboration with NMF will be a key asset in meeting the goals of the program and ultimately improving the lives of persons who are at risk for aortic dissection or who have suffered such an event,” said NHLBI Acting Director Barbara Alving, M.D. The purpose of the registry is to collect and analyze clinical data and samples (e.g., blood and tissue) of people with aortic dissection in order to improve understanding of cardiovascular complications and therapies. Funding for the project is designated for 2005.

“Such a registry is an important piece in our strategic efforts to address aortic dissection, the most serious complication that faces people with the Marfan syndrome,” said NMF Director of Research Josephine Grima, Ph.D. “We have worked diligently over the past few years to educate the public and medical community about aortic dissection through our Emergency Medicine Campaign and fund research on aortic disease. However, the registry has the potential to take the understanding of aortic disease and the Marfan syndrome to the next level. This could have significant research implications and open the door to new methods of treatment and management.”

More details from the NHLBI will be forthcoming in 2004.