Also on Trial Friend:CDKL5 Deficiency Disorder pageMatch Me
The CDKL5 Deficiency Disorder trial and their US sites
Enter your ZIP code above to sort them by how far their nearest open site is from you.
New trials, status changes and new sites, straight from ClinicalTrials.gov. Unsubscribe anytime.
- Trial Alerts, when a new trial opens or a trial changes
- Disease Updates, FDA decisions and condition news, usually 1 or 2 emails a month
Who runs the CDKL5 Deficiency Disorder trials in the US, and what stage they are in
None of the 1 CDKL5 Deficiency Disorder trial with a US site is in Phase 3, the last stage before a company can ask the FDA for approval. The last one has no drug phase, such as a study that follows people over time or tests a device or a way of giving care. Universities, hospitals, foundations and government groups run all of them, with no company leading one. The most recently listed one first appeared on ClinicalTrials.gov on September 28, 2022.
CDKL5 Deficiency Disorder trials in the US, state by state
The only CDKL5 Deficiency Disorder trial with a US site accepts children under 18. Its open sites are in 8 states, most often California, Colorado and Massachusetts. A trial counts once in each state where it has an open site, and some trials accept both children and adults.
US hospitals running the most CDKL5 Deficiency Disorder 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 CDKL5 Deficiency Disorder.
- Baylor College of Medicine/ Texas Children's HospitalHouston, Texas1 trial
- Children's Hospital of PhiladelphiaPhiladelphia, Pennsylvania1 trial
- Cleveland Clinic FoundationCleveland, Ohio1 trial
- Harvard Medical School/Boston Children's HospitalBoston, Massachusetts1 trial
- NYU Langone HealthNew York, New York1 trial
- University of California Los Angeles/UCLA Mattel Children's HospitalLos Angeles, California1 trial
- University of Colorado Denver/Children's Hospital ColoradoAurora, Colorado1 trial
- Washington University in St. Louis/St. Louis Children's HospitalSt Louis, Missouri1 trial
Help getting to a CDKL5 Deficiency Disorder 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 CDKL5 Deficiency Disorder trial near you
Are there CDKL5 Deficiency Disorder clinical trials near me?
As of November 13, 2026, 1 CDKL5 Deficiency Disorder clinical trial is recruiting now and 2 are not yet recruiting. In the US, 1 of them has at least 1 open site, across 8 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 CDKL5 Deficiency Disorder clinical trial sites?
Recruiting CDKL5 Deficiency Disorder trials list open sites in California, Colorado, Massachusetts, Missouri, New York, Ohio, Pennsylvania and Texas.
Are there CDKL5 Deficiency Disorder trials for children near me?
The only CDKL5 Deficiency Disorder trial with a US site accepts children under 18. Its open sites are in 8 states, most often California, Colorado and Massachusetts. 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 CDKL5 Deficiency Disorder 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 CDKL5 Deficiency Disorder 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 CDKL5 Deficiency Disorder 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 CDKL5 Deficiency Disorder: Ztalmy (ganaxolone).
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.