New registry aims to unlock secrets of rare Kidney-Liver diseases
NCT ID NCT01401998
First seen Jun 16, 2026
Summary
This study is creating a central database and tissue bank for rare diseases affecting the kidneys and liver, such as ARPKD and Joubert syndrome. Researchers will collect medical information, genetic samples, and tissues from 200 participants to help doctors and scientists better understand, diagnose, and treat these conditions. The goal is to share this information with families and healthcare providers to speed up research and improve care.
Disclaimer
Read more
Show less
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.
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 BARDET-BIEDL SYNDROME are added.
Genom att skicka in godkänner du våra Användarvillkor
Contacts and locations
Show contact details
Enter your email to view the contact information for this study.
Genom att skicka in godkänner du våra Användarvillkor
Study contacts
-
Contact
Phone: •••-•••-•••• Email: •••••@•••••
-
Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
-
Boston Children's
ENROLLING_BY_INVITATIONBoston, Massachusetts, 02115, United States
-
Children's Hospital of Philadelphia
RECRUITINGPhiladelphia, Pennsylvania, 19146, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
-
Children's National Hospital
RECRUITINGWashington D.C., District of Columbia, 20010, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Cincinnati Children's
ENROLLING_BY_INVITATIONCincinnati, Ohio, 45229, United States
-
Emory
RECRUITINGAtlanta, Georgia, 30322, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
University of Utah
RECRUITINGSalt Lake City, Utah, 84108, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.