New registry aims to unlock secrets of rare childhood diseases
NCT ID NCT05619900
First seen Apr 13, 2026 · Last updated May 24, 2026 · Updated 10 times
Summary
This study collects health information from up to 250 people with lysosomal storage diseases, including pregnant women whose fetus has a diagnosis. Researchers will track symptoms, lab results, and development over time to better understand how these rare conditions progress. The goal is to improve prenatal care and future treatments.
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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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University of California San Francisco
RECRUITINGSan Francisco, California, 94143, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Conditions
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