Also on Trial Friend:Rett Syndrome pageMatch Me
All 13 Rett Syndrome trials and their US sites
Enter your ZIP code above to sort them by how far their nearest open site is from you.
- Rett Syndrome RegistryMost sites in California, Ohio and TexasRecruitingAges 0-99International Rett Syndrome Foundation19US sites
15 states - To Investigate the Efficacy of Treatment With Oral NA-921 (Bionetide) Versus Placebo in Females With Rett SyndromeMost sites in California, Arizona and ColoradoRecruitingPhase 3Ages 5-20Biomed Industries14US sites
11 states - A Phase 3 Study of Fenfluramine Hydrochloride in Rett SyndromeMost sites in Florida, Texas and ArkansasRecruitingPhase 3Ages 5-35UCB BIOSCIENCES8US sites
6 states - Neurophysiologic Biomarkers in Rett SyndromeMost sites in California, Colorado and MassachusettsRecruitingAges 1-18Children's Hospital of Philadelphia6US sites
6 states - Auditory EEG and Behavioral Assessments in Individuals With Rett SyndromeOnly in New YorkRecruitingAges 2+University of Rochester1US site
- Cognitive Function in Rett Syndrome During Trofinetide TreatmentOnly in MinnesotaRecruitingAges 18-99University of Minnesota1US site
- Intensive Multimodal Neurorehabilitation Targeting Neuroplasticity in Pediatric Neurodevelopmental and Chromosomal DisordersOnly in TexasRecruitingAges 4-12Healing Hope International1US site
- The Rett Syndrome Global RegistryOnly in ConnecticutRecruitingRett Syndrome Research Trust1US site
- A Pilot Study of an Antioxidant Cocktail vs. Placebo in the Treatment of Children and Adolescents With Rett SyndromeRecruitingPhase 2Ages 2-21Holland Bloorview Kids Rehabilitation HospitalNo US site yet
- Gene Editing as a Therapeutic Approach for Rett SyndromeRecruitingAges 6 Months+University of SienaNo US site yet
- GROWing Up With Rare GENEtic SyndromesRecruitingAges 18+dr. Laura C. G. de Graaff-HerderNo US site yet
- Repurposing Mirtazapine in Rett SyndromeRecruitingPhase 2Ages 5-40University of TriesteNo US site yet
- Rett REVOLUTION Trial: An Exploratory Evaluation of the Safety and Efficacy of Vorinostat in Rett SyndromeRecruitingPhase 1Ages 6-21Unravel BiosciencesNo US site yet
New trials, status changes and new sites, straight from ClinicalTrials.gov. Unsubscribe anytime.
- Trial Alerts, when a new trial opens or a trial changes
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Who runs the Rett Syndrome trials in the US, and what stage they are in
Of the 9 Rett Syndrome trials with a US site, 2 are in Phase 3, the last stage before a company can ask the FDA for approval. The remaining 7 have no drug phase, such as studies that follow people over time or test a device or a way of giving care. Companies run 2 of them, and universities, hospitals, foundations and government groups run 7. The most recently listed one first appeared on ClinicalTrials.gov on July 28, 2026.
Rett Syndrome trials in the US, state by state
Of the 9 Rett Syndrome trials with a US site, 7 accept children under 18. Their open sites are in 21 states, most often Texas, Pennsylvania and California. A trial counts once in each state where it has an open site, and some trials accept both children and adults.
Show the other 11 states
US hospitals running the most Rett Syndrome trials
Centers that run trials for a rare condition often see more people with it than most clinics do, so this list can also help you find doctors who know Rett Syndrome.
- Children's Hospital of PhiladelphiaPhiladelphia, Pennsylvania2 trials
- Texas Children's HospitalHouston, Texas2 trials
- Ability and BeyondThe Woodlands, Texas1 trial
- Biomed Testing Facility # BIO-01-85012Phoenix, Arizona1 trial
- Biomed Testing Facility # BIO-02-94104San Francisco, California1 trial
- Biomed Testing Facility # BIO-03-95817Sacramento, California1 trial
- Biomed Testing Facility # BIO-04-90095Los Angeles, California1 trial
- Biomed Testing Facility # BIO-05-92093La Jolla, California1 trial
- Biomed Testing Facility #BIO-06-80042Aurora, Colorado1 trial
- Biomed Testing Facility #BIO-07-33606Tampa, Florida1 trial
Help getting to a Rett Syndrome trial far from home
Ask the study team whether the trial pays back travel, parking and hotel costs, because many sponsors do. The FDA's guidance on paying research volunteers says paying back these costs does not count as pressuring someone to join.
These nonprofits also help patients reach care, and each one sets its own rules.
- Mercy Medical Angels
- Pays for gas cards, ground rides and airline tickets anywhere in the US, and it lists clinical trials as a reason to travel. Household income at or below 300% of the federal poverty guidelines, and usually a trip of 50 miles or more each way.
- Air Charity Network
- Volunteer pilots in all 50 states fly patients for free in small private planes, and members also fly people taking part in clinical trials. You must be able to walk and sit upright for the flight, show financial need and have a backup plan if weather cancels it.
- Ronald McDonald House
- Gives families a room near the hospital while a child gets care, through 394 House programs around the world. Families of a sick child, with rules set by each local chapter.
- Healthcare Hospitality Network
- Keeps a map of hospitality houses near hospitals, and most member houses charge little or nothing to patients and families. Each house sets its own rules, so check with the house near your study site.
Program details were checked on each program's website on October 24, 2026.
Questions about finding a Rett Syndrome trial near you
Are there Rett Syndrome clinical trials near me?
As of November 13, 2026, 13 Rett Syndrome clinical trials are recruiting now and 2 are not yet recruiting. In the US, 9 of them have at least 1 open site, across 21 states. Enter your ZIP code on this page to rank every one of them by the distance to its closest open site, with the sites shown on a map.
Which states have Rett Syndrome clinical trial sites?
Recruiting Rett Syndrome trials list open sites in 21 states. Texas, Colorado and Pennsylvania have the most, and the table on this page lists every state.
Are there Rett Syndrome trials for children near me?
Of the 9 Rett Syndrome trials with a US site, 7 accept children under 18. Their open sites are in 21 states, most often Texas, Pennsylvania and California. Each trial sets its own age limits, so check the ages listed on a trial before you contact it.
Who pays for travel to a Rett Syndrome clinical trial?
Many trial sponsors pay back travel, parking and hotel costs, so ask the study team before you rule out a far-away site. The FDA's guidance says paying back these costs does not count as pressuring someone to join. Charities such as Mercy Medical Angels and Air Charity Network can also help with rides and flights.
What if there is no Rett Syndrome trial near me?
Some trials send staff to your home or use a local lab, so fewer visits happen at the study site. You can also sign up on this page to get an email when a Rett Syndrome trial opens a new site or changes status.
How is the distance to a trial site measured?
Distances are straight-line miles from the center of your ZIP code to each study site's listed location, not driving distance. Your browser looks up the ZIP code's coordinates with a free map service, Zippopotam.us, and the ZIP code is never sent to or stored by Trial Friend.
FDA-approved for Rett Syndrome: Daybue (trofinetide).
Clinical trials near you for related conditions
Source: ClinicalTrials.gov, trials with status Recruiting or Not yet recruiting. Refreshed every 6 hours; counts as of November 13, 2026. Sites that ClinicalTrials.gov lists as closed or withdrawn are left out. Children means the trial's age group includes people under 18.
