[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"trial:NCT05432349":3,"trial-entities:NCT05432349":314,"trial-summary:NCT05432349":318},{"id":4,"nct_id":4,"org_study_id":5,"brief_title":6,"official_title":7,"overall_status":8,"completion_date":9,"status_verified_date":10,"last_update_date":11,"start_date":12,"sponsor_name":13,"lead_sponsor_class":14,"has_dmc":15,"brief_summary":16,"detailed_description":17,"conditions":18,"keywords":29,"study_type":35,"primary_purpose":17,"phases":36,"enrollment_info":37,"interventions":40,"primary_outcomes":41,"secondary_outcomes":46,"sex":47,"minimum_age":48,"maximum_age":49,"healthy_volunteers":15,"eligibility_criteria":50,"std_ages":56,"locations":60,"central_contacts":306,"overall_officials":311,"references":312,"see_also_links":313},"NCT05432349","Pro00060206","Rett Syndrome Registry","Rett Syndrome Real World Data Observational Registry","RECRUITING","2028-07","2026-06","2026-06-30","2022-08-02","International Rett Syndrome Foundation","OTHER",false,"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.",null,[19,20,21,22,23,24,25,26,27,28],"Rett Syndrome","Rett Syndrome, Atypical","Genetic Disease","Genetic Diseases, X-Linked","Intellectual Disability","Neurobehavioral Manifestations","Neurologic Manifestations","Neurologic Disorder","Neurodevelopmental Disorders","Nervous System Diseases",[30,31,32,33,34],"Rett syndrome","MECP2","Neurodevelopmental disorder","Registry","Natural History Study","OBSERVATIONAL",[],{"count":38,"type":39},3000,"ESTIMATED",[],[42],{"measure":43,"description":44,"timeFrame":45},"Natural History","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).","5 years",[],"ALL","0 Years","99 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Suter","(832) 822-7388","bbc@texaschildrens.org",{"lat":304,"lon":305},29.76328,-95.36327,[307],{"name":308,"role":70,"phone":309,"email":310},"Dominique Pichard","513-874-3020","research@rettsyndrome.org",[],[],[],{"nct_id":4,"conditions":315,"biomarkers":316},[19],[317],"MECP2 Gene",{"nct_id":4,"found":319,"summary":320,"prompt_version":329},true,{"design":321,"status":322,"heading":6,"summary":323,"follow_up":324,"word_count":325,"commitments":326,"compensation":327,"drugs_mentioned":328},"This is an observational study that plans to enroll 3000 participants. It is a longitudinal study, meaning it will collect data over a long period.","completed","This is an observational study, meaning it collects information without testing a specific treatment. It's called the Rett Syndrome Registry and aims to gather data on people with Rett syndrome who have a specific genetic change (pathologic loss of function alteration of MECP2). The study will collect information on symptoms from both medical experts and caregivers. The goal is to create better care guidelines and help develop new treatments for Rett syndrome. The study plans to include 3000 participants, ranging from newborns to 99 years old, and is currently unclear if it's recruiting.","The natural history of Rett syndrome will be measured at 5 years.",93,"Not specified in the trial record.","Not stated in the trial record.",[],"v2"]