Scientists seek answers for rare, Life-Limiting genetic disorder
NCT ID NCT00001456
Summary
This study aims to better understand Hermansky-Pudlak Syndrome (HPS), a rare inherited disease that causes albinism, bleeding problems, and serious lung and organ complications. Researchers will evaluate up to 600 participants with HPS or their family members to track the disease's progression, identify genetic causes, and collect samples for future research. The goal is to gather knowledge about HPS, as there is currently no known cure or specific treatment.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes NO responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for HERMANSKY-PUDLAK SYNDROME (HPS) are added.
By submitting, you agree to our Terms of use
Contacts and locations
Show contact details
Enter your email to view the contact information for this study.
By submitting, you agree to our Terms of use
Study contacts
-
Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
-
National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
Conditions
Explore the condition pages connected to this study.