New database aims to unlock secrets of rare kidney and liver diseases
NCT ID NCT01401998
First seen Jun 16, 2026 · Last updated Jun 16, 2026
Summary
This study is creating a large database and tissue bank for people with rare liver and kidney diseases like ARPKD and Joubert syndrome. Researchers will collect medical information, genetic data, and tissue samples from 200 participants to help future studies. The goal is to better understand these diseases and improve diagnosis and treatment options for families.
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This is a summary of
the original study
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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.
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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Boston Children's
ENROLLING_BY_INVITATIONBoston, Massachusetts, 02115, United States
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Children's Hospital of Philadelphia
RECRUITINGPhiladelphia, Pennsylvania, 19146, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
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Children's National Hospital
RECRUITINGWashington D.C., District of Columbia, 20010, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Cincinnati Children's
ENROLLING_BY_INVITATIONCincinnati, Ohio, 45229, United States
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Emory
RECRUITINGAtlanta, Georgia, 30322, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Utah
RECRUITINGSalt Lake City, Utah, 84108, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
Explore the condition pages connected to this study.