Congenital Heart Block Study - LUPUS with IVIG, NYC

Issues concerning developments in care of Ocular Inflammatory Disease and other noteworthy Items are contained in this forum.

Moderators: Mike Bartolatz, kwork

Post Reply
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Congenital Heart Block Study - LUPUS with IVIG, NYC

Post by Mike Bartolatz »

"The research team working on Neonatal Lupus Congenital Heart Block, including the Research Registry of Neonatal Lupus, under direction of Dr. Jill P. Buyon, is pleased to announce the launching of a new research opportunity. We have assembled the resources to embark on a trial of prophylactic treatment to try to prevent congenital heart block BEFORE it begins. Everyone can get treated - there is no placebo or "dummy" group.

The challenge of this project is that we need to enroll patients who have had a prior affected child with heart block or rash, in whom the recurrence rate is 1 in 5, BEFORE the 2 month pregnancy point. In other words, as soon as a woman with a previously affected child knows she is pregnant, and before 12 weeks of gestation, we need her full participation. WE NEED YOUR HELP!

The study involves receiving 5 separate infusions of intravenous immune globulin, a human blood product, beginning at about 2 months of pregnancy and continuing every few weeks through the 7th month. Some extra blood specimens will also be obtained from you on these occasions. The product has been used for many years during pregnancy and is safe. The rest of your health care will follow the rigorous, close monitoring, including fetal echocardiograms, which we recommend in such pregnancies. There is no charge to you.

This study, although time consuming on your part and involving extra blood sticks and drug infusions, has the potential to protect your fetus from the nearly 20% chance (1 in 5) of developing a very serious heart condition, congenital heart block, at a very low risk.

If you are interested or simply want more information, please contact Dr. Jill P. Buyon, rheumatologist, at 212-263-0746 or Dr. Deborah M. Friedman, pediatric cardiologist, at 973-322-5691

Thank you for your cooperation, and we look forward to hearing from you.

Sincerely, Jill P. Buyon MD"

Hopefully this will be a good way to spread the word. Thanks for taking the time to read this post. Christy
Mike Bartolatz
Post Reply