For our families affected by incontinentia pigmenti, we wanted to share with you information about a study that is seeking participants. Here is the letter from lead investigators with all of the details.
Dear patients and families affected by incontinentia pigmenti,
Incontinentia pigmenti (IP) is a rare disorder that primarily affects the skin and brain, but a few cases of heart abnormalities have been reported as well. This includes congenital heart disease (CHD; an abnormality in the structure of the heart) and pulmonary hypertension (PH; an elevated pressure in the lung arteries). We are currently investigating the prevalence of CHD and PH in patients with IP by examining their echocardiograms (ultrasounds of the heart). Our study may help shed some light on the cardiovascular effects of IP, and may impact the care of all patients with IP.
Please contact us if you are interested in participating in our study. If you or your child has been diagnosed with IP and previously had an echocardiogram (performed at the age of 0 to 21 years old) for any reason, we will ask you to obtain a CD-ROM copy of that echocardiogram for our analysis (we will cover the mailing fee). If no previous echocardiogram is available, but you live in the New York metropolitan area, we may be able to offer a free echocardiogram at no cost to you.
If you are interested in participating in this study, please contact us at the following email address (with the subject “IP RESEARCH”) so that we may discuss the details with you: firstname.lastname@example.org.
Thank you very much for your interest in our study.
Denise A. Hayes, MD & Caitlin Heyden, DO
Department of Pediatric Cardiology
Steven and Alexandra Cohen Children’s Medical Center
269-01 76th Avenue Suite 139
New Hyde Park, NY 11040
Tel: (718) 470-7350