Medical Information Only. Always consult your healthcare provider before enrolling in any clinical trial.
NCT05432349 · ClinicalTrials.gov registry record
Rett Syndrome Registry
A clinical trial of Genetic Disease and Neurodevelopmental Disorders, sponsored by International Rett Syndrome Foundation.
- Recruiting
- Registry status
- 3,000
- Enrollment target
- 18
- Study locations
NCT05432349: Recruiting study of Genetic Disease and Neurodevelopmental Disorders, sponsored by International Rett Syndrome Foundation.
NCT05432349 is a study of Genetic Disease and Neurodevelopmental Disorders that is actively recruiting participants, run by International Rett Syndrome Foundation. The registered enrollment target is 3,000 participants, above the 2,461-participant average among 30 other Genetic Disease trials with a reported enrollment target (22% higher). The trial reports 18 study locations across 15 states. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT05432349, a study of Genetic Disease and Neurodevelopmental Disorders, is actively recruiting participants, sponsored by International Rett Syndrome Foundation.
- RECRUITING
- Registry status
- 3,000 participants
- Enrollment target
- 18
- Study locations
Study Summary
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.
Primary Outcome
To longitudinally evaluate the natural history of patients with mutations on the MECP2 gene, estimating and defining their clinical spectrum (e.g. disease course and complications of disease).
Conditions Studied
Study Locations (18)
California
- Children's Hospital Los Angeles - Los Angeles
- UCSF Benioff Children's Hospital - Oakland
Ohio
- Cincinnati Children's Hospital Medical Center - Cincinnati
- Nationwide Children's Hospital - Columbus
Texas
- Children's Health - Dallas
- Texas Children's Hospital - Houston
Alabama
- University of Alabama - Birmingham
Colorado
- Children's Hospital Colorado - Denver
Illinois
- Rush University Medical Center - Chicago
Maryland
- Kennedy Krieger Institute - Baltimore
Massachusetts
- Boston Children's Hospital - Boston
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 3,000 participants |
| Start Date | 2022-08-02 |
| Est. Completion | 2028-07 |
What NCT05432349 shows while recruiting
NCT05432349 is an observational study that tracks outcomes without assigning an intervention. Its 3,000 participants enrollment target places it among the larger protocols in the corpus, above the 2,461-participant average among 30 other Genetic Disease trials with a reported enrollment target (22% higher).
The record links to 10 conditions, with Genetic Disease appearing as the primary indexed condition, and to 0 interventions.
NCT05432349 lists 18 locations in 15 states (California, Ohio, Texas).
Frequently Asked Questions
What is clinical trial NCT05432349 about?
NCT05432349 is a clinical study titled "Rett Syndrome Registry". 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 ...
What is the current status of trial NCT05432349?
This trial is currently recruiting. The enrollment target is 3,000 participants. The study started on 2022-08-02. Estimated completion is 2028-07.
What conditions does trial NCT05432349 study?
This clinical trial studies the following conditions: Genetic Disease, Neurodevelopmental Disorders, Intellectual Disability, Nervous System Diseases, Rett Syndrome.
Who is sponsoring clinical trial NCT05432349?
This trial is sponsored by International Rett Syndrome Foundation, which has 1 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT05432349 being conducted?
This trial has 18 study locations across Alabama, California, Colorado, Illinois, Maryland. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
Learn More About Clinical Trials
Similar trials for Genetic Disease
Matched on the same primary condition, ranked to surface studies in the same phase first, then by recruiting status, no relevance scoring or editorial curation.
Where NCT05432349's enrollment target sits among peer trials
3,000 5th of 30 higher than 26 of 30 other Genetic Disease trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other Genetic Disease trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
Source ClinicalTrials.gov registry export · 2026-08-08
-
An Adaptive Clinical Trial of BeginNGS Newborn Screening for Hundreds of Genetic Diseases by Genome Sequencing
RECRUITING · NA
-
Delineating the Molecular Spectrum and the Clinical, Imaging and Neuronal Phenotype of Chopra-Amiel-Gordon Syndrome
RECRUITING
-
Natural History Study of Patients with HPDL Mutations
RECRUITING
-
Diagnostic Odyssey: Whole Genome Sequencing (WGS)
RECRUITING
-
Clinical and Genetic Evaluation of Individuals With Undiagnosed Disorders Through the Undiagnosed Diseases Network
RECRUITING
-
Follow-up With Preimplantation Genetic Testing Patients
RECRUITING
Nationwide trials with similar profiles
Cross-condition peers matched on enrollment target and registry start date, not the same-condition list above.
Similar enrollment target
- NCT00004847 · 3,000 participants · Phase 1
Diagnosis of Pheochromocytoma
- NCT00478712 · 3,000 participants
Hirschsprung Disease Genetic Study
- NCT00579566 · 3,000 participants
Novel Biochemical and Molecular Determinants for Soft Tissue Sarcoma
- NCT00816114 · 3,000 participants
Chart Review Study of Chronic Myelogenous Leukemia (CML) Patients Treated With Imatinib Outside of a Clinical Trial
Similar registry start date
- NCT05962346 · started 2026-12 · NA
Fetal Endoscopic Tracheal Occlusion for Congenital Diaphragmatic Hernia
- NCT07125183 · started 2026-12 · Phase 2
Study on Efficacy and Tolerability of Weekly Doxorubicin in Elderly Patients With Advanced or Metastatic Leiomyosarcoma
- NCT07292298 · started 2026-11 · Phase 2
Phase 2 Single-Arm Rectal Cancer Brachytherapy for Patients With Low-Lying Residual Adenocarcinoma After Total Neoadjuvant Therapy to Improve Organ Preservation Rates
- NCT04263285 · started 2026-10 · NA
Treatment of Depression Post-SCI