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.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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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
Email: •••••@•••••
Locations
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Boston Children's Hospital
RECRUITINGBoston, Massachusetts, 02115, United States
Contact Email: •••••@•••••
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Children's Health
RECRUITINGDallas, Texas, 75207, United States
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Children's Hospital Colorado
RECRUITINGDenver, Colorado, 80045, United States
Contact Email: •••••@•••••
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Children's Hospital Los Angeles
RECRUITINGLos Angeles, California, 90027, United States
Contact Email: •••••@•••••
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Children's Hospital of Philadelphia
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
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Cincinnati Children's Hospital Medical Center
RECRUITINGCincinnati, Ohio, 45229, United States
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Gillette Children's Specialty Healthcare
RECRUITINGSaint Paul, Minnesota, 55101, United States
Contact Email: •••••@•••••
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Greenwood Genetic Center
RECRUITINGGreenwood, South Carolina, 29646, United States
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Kennedy Krieger Institute
RECRUITINGBaltimore, Maryland, 21205, United States
Contact Email: •••••@•••••
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Nationwide Children's Hospital
RECRUITINGColumbus, Ohio, 43205, United States
Contact Email: •••••@•••••
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Nicklaus Children's Hospital
RECRUITINGMiami, Florida, 33155, United States
Contact Email: •••••@•••••
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Rady Children's Hospital - San Diego
RECRUITINGSan Diego, California, 92123, United States
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Rush University Medical Center
RECRUITINGChicago, Illinois, 60612, United States
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Texas Children's Hospital
RECRUITINGHouston, Texas, 77030, United States
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The University of North Carolina at Chapel Hill
RECRUITINGChapel Hill, North Carolina, 27517, United States
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UCSF Benioff Children's Hospital
RECRUITINGOakland, California, 94598, United States
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University of Alabama
RECRUITINGBirmingham, Alabama, 35233, United States
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Vanderbilt Kennedy Center
RECRUITINGNashville, Tennessee, 37232, United States
Contact Email: •••••@•••••
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Washington University in St. Louis
RECRUITINGSt Louis, Missouri, 63110, United States
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