Rett Syndrome Registry
Public ClinicalTrials.gov record NCT05432349. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Official title
Rett Syndrome Real World Data Observational Registry
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
The Rett Syndrome Registry is a longitudinal observational study of individuals with MECP2 mutations and a diagnosis of Rett syndrome. Designed together with the IRSF Rett Syndrome Center of Excellence Network medical directors, this study collects data on the signs and symptoms of Rett syndrome as reported by the Rett syndrome experts and by the caregivers of individuals with Rett syndrome. This study will be used to develop consensus based guidelines for the care of your loved ones with Rett syndrome and to facilitate the development of better clinical trials and other aspects of the drug development path for Rett syndrome.
Study identification
- NCT ID
- NCT05432349
- Recruitment status
- Recruiting
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 3,000 participants
Conditions and interventions
Eligibility (public fields only)
- Age range
- 0 Years to 99 Years
- Sex
- All
- Healthy volunteers
- Healthy volunteers not accepted
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Aug 2, 2022 (Actual)
- Primary completion
- Jul 2027 (Estimated)
- Completion
- Jul 2028 (Estimated)
- Last update posted
- Jun 30, 2026
2022 – 2028
United States locations
- U.S. sites
- 19
- U.S. states
- 15
- U.S. cities
- 19
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| University of Alabama | Birmingham | Alabama | 35233 | Recruiting |
| Children's Hospital Los Angeles | Los Angeles | California | 90027 | Recruiting |
| UCSF Benioff Children's Hospital | Oakland | California | 94598 | Recruiting |
| Rady Children's Hospital - San Diego | San Diego | California | 92123 | Recruiting |
| Children's Hospital Colorado | Denver | Colorado | 80045 | Recruiting |
| Nicklaus Children's Hospital | Miami | Florida | 33155 | Recruiting |
| Rush University Medical Center | Chicago | Illinois | 60612 | Recruiting |
| Kennedy Krieger Institute | Baltimore | Maryland | 21205 | Recruiting |
| Boston Children's Hospital | Boston | Massachusetts | 02115 | Recruiting |
| Gillette Children's Specialty Healthcare | Saint Paul | Minnesota | 55101 | Recruiting |
| Washington University in St. Louis | St Louis | Missouri | 63110 | Recruiting |
| The University of North Carolina at Chapel Hill | Chapel Hill | North Carolina | 27517 | Recruiting |
| Cincinnati Children's Hospital Medical Center | Cincinnati | Ohio | 45229 | Recruiting |
| Nationwide Children's Hospital | Columbus | Ohio | 43205 | Recruiting |
| Children's Hospital of Philadelphia | Philadelphia | Pennsylvania | 19104 | Recruiting |
| Greenwood Genetic Center | Greenwood | South Carolina | 29646 | Recruiting |
| Vanderbilt Kennedy Center | Nashville | Tennessee | 37232 | Recruiting |
| Children's Health | Dallas | Texas | 75207 | Recruiting |
| Texas Children's Hospital | Houston | Texas | 77030 | Recruiting |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT05432349, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted Jun 30, 2026 · Synced Oct 22, 2026
Related: full search, browse by condition, browse by drug or therapy, browse by sponsor, browse by U.S. city.
Open the official record
The complete public registry record, listed eligibility criteria, and available contact information for NCT05432349 live on ClinicalTrials.gov.