Massive global registry aims to unlock secrets of rett syndrome
NCT ID NCT05432349
First seen Jun 30, 2026 · Last updated Jul 01, 2026 · Updated 1 time
Summary
This study creates a large registry of people with Rett syndrome, a rare genetic disorder that causes severe intellectual and physical disabilities. Researchers will collect information from doctors and caregivers to understand how the disease progresses over time. The goal is to develop better care guidelines and make future clinical trials more effective.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this registry could lead to better care guidelines for Rett syndrome and more effective clinical trials for new treatments.
What could go wrong
This is an observational study, not a treatment trial. It collects data but does not test any therapy, so it won't directly improve symptoms.
Disclaimer
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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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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.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Boston Children's Hospital
RECRUITINGBoston, Massachusetts, 02115, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Children's Health
RECRUITINGDallas, Texas, 75207, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Children's Hospital Colorado
RECRUITINGDenver, Colorado, 80045, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Children's Hospital Los Angeles
RECRUITINGLos Angeles, California, 90027, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Children's Hospital of Philadelphia
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Cincinnati Children's Hospital Medical Center
RECRUITINGCincinnati, Ohio, 45229, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Gillette Children's Specialty Healthcare
RECRUITINGSaint Paul, Minnesota, 55101, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Greenwood Genetic Center
RECRUITINGGreenwood, South Carolina, 29646, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Kennedy Krieger Institute
RECRUITINGBaltimore, Maryland, 21205, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Nationwide Children's Hospital
RECRUITINGColumbus, Ohio, 43205, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Nicklaus Children's Hospital
RECRUITINGMiami, Florida, 33155, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Rady Children's Hospital - San Diego
RECRUITINGSan Diego, California, 92123, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Rush University Medical Center
RECRUITINGChicago, Illinois, 60612, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Texas Children's Hospital
RECRUITINGHouston, Texas, 77030, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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The University of North Carolina at Chapel Hill
RECRUITINGChapel Hill, North Carolina, 27517, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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UCSF Benioff Children's Hospital
RECRUITINGOakland, California, 94598, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Alabama
RECRUITINGBirmingham, Alabama, 35233, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Vanderbilt Kennedy Center
RECRUITINGNashville, Tennessee, 37232, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Washington University in St. Louis
RECRUITINGSt Louis, Missouri, 63110, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••