Also on Trial Friend:Tay-Sachs Disease pageMatch Me
All 6 Tay-Sachs Disease trials and their US sites
Enter your ZIP code above to sort them by how far their nearest open site is from you.
- The Myelin Disorders Biorepository ProjectMost sites in California, Pennsylvania and MinnesotaRecruitingChildren's Hospital of Philadelphia24US sites
14 states - A Study to Evaluate the Safety and Efficacy of Oral Nizubaglustat (AZ-3102) in Late-infantile and Juvenile Forms of Niemann-Pick Type C Disease, GM1 Gangliosidosis or GM2 GangliosidosisMost sites in Minnesota, California and TexasRecruitingPhase 3Ages 4+Azafaros B.V.5US sites
4 states - A Natural History Study of the GangliosidosesOnly in MinnesotaRecruitingUniversity of Minnesota1US site
- Caregiving Networks Across Disease Context and the Life CourseOnly in MarylandRecruitingAges 18-100National Human Genome Research Institute (NHGRI)1US site
- Longitudinal Study of Neurodegenerative DisordersOnly in PennsylvaniaRecruitingUniversity of Pittsburgh1US site
- UCB Transplant of Inherited Metabolic Diseases With Administration of Intrathecal UCB Derived Oligodendrocyte-Like CellsOnly in North CarolinaRecruitingPhase 1Ages 1 Week-22Joanne Kurtzberg, MD1US site
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Who runs the Tay-Sachs Disease trials in the US, and what stage they are in
Of the 6 Tay-Sachs Disease trials with a US site, 1 is in Phase 3, the last stage before a company can ask the FDA for approval. One more is an earlier Phase 1 or 2 test of safety and dosing. The remaining 4 have no drug phase, such as studies that follow people over time or test a device or a way of giving care. Companies run 1 of them, and universities, hospitals, foundations and government groups run 5. The most recently listed one first appeared on ClinicalTrials.gov on July 8, 2025.
Tay-Sachs Disease trials in the US, state by state
Of the 6 Tay-Sachs Disease trials with a US site, 5 accept children under 18. Their open sites are in 13 states and Washington, DC, most often Minnesota, California and North Carolina. A trial counts once in each state where it has an open site, and some trials accept both children and adults.
Show the other 4 states
US hospitals running the most Tay-Sachs Disease 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 Tay-Sachs Disease.
- Akron Children's HospitalAkron, Ohio1 trial
- Ann & Robert H. Lurie Children's Hospital of ChicagoChicago, Illinois1 trial
- Atrium Health Wake Forest BaptistWinston-Salem, North Carolina1 trial
- Baylor College of Medicine (Texas Children's Hospital)Houston, Texas1 trial
- Children's Hospital of Los AngelesLos Angeles, California1 trial
- Children's Hospital of Orange CountyOrange, California1 trial
- Children's Medical Center DallasDallas, Texas1 trial
- Children's National Medical CenterWashington D.C., District of Columbia1 trial
- Duke University Medical CenterDurham, North Carolina1 trial
- Emory University (Children's Healthcare of Atlanta)Atlanta, Georgia1 trial
Help getting to a Tay-Sachs Disease 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 Tay-Sachs Disease trial near you
Are there Tay-Sachs Disease clinical trials near me?
As of November 13, 2026, 6 Tay-Sachs Disease clinical trials are recruiting now and 2 are not yet recruiting. In the US, 6 of them have at least 1 open site, across 13 states and Washington, DC. 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 Tay-Sachs Disease clinical trial sites?
Recruiting Tay-Sachs Disease trials list open sites in 13 states and Washington, DC. Minnesota, California and Maryland have the most, and the table on this page lists every state.
Are there Tay-Sachs Disease trials for children near me?
Of the 6 Tay-Sachs Disease trials with a US site, 5 accept children under 18. Their open sites are in 13 states and Washington, DC, most often Minnesota, California and North Carolina. 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 Tay-Sachs Disease 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 Tay-Sachs Disease 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 Tay-Sachs Disease 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.
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.