Registry Study to Observe Long-term Safety of Vamorolone (AGAMREE®) in Patients With Duchenne Muscular Dystrophy-SUMMIT

Part of paid clinical trials in Phoenix, Arizona.

Sponsor
Catalyst Pharmaceuticals, Inc.
Study ID
NCT06564974
Status
Recruiting

Conditions

Eligibility Criteria

Sex
MALE
Age
2 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • Vamorolone — DRUG
    Study treatment is AGAMREE®, which is commercially available as an oral suspension.

Study Details

The goal of this study is to collect additional information on the safety of long-term treatment with AGAMREE® and to explore long-term clinical impact of AGAMREE® on quality of life, as assessed by standardized patient-reported outcome measures (QoL questionnaires) in male patients aged 2 years and older with Duchenne muscular dystrophy (DMD).

Key Dates

Start date
Sep 25, 2024
Status verified
Sep 2025
Primary completion
Feb 29, 2032
Completion
Feb 29, 2032

Study Design

Enrollment
250 participants (estimated)

Primary Outcome Measure

Change in Height z-score [ Time Frame: At Enrollment Visit (baseline), and at each Yearly Follow-up Visit (for up to 5 years). ]

Central Contacts

Locations (25)

FacilityCityStateZIPSite coordinators
Phoenix Children's HospitalPhoenixArizona85016
Saunder Bernes, MD
602 933 0956
Arkansas Childrens HospitalLittle RockArkansas72202
Aravindhan Veerapandiyan, MD
(501) 364-1850
Children's Hospital Los AngelesLos AngelesCalifornia90027
Leigh Maria Ramos-Platt, MD
323 660 2450
Stanford UniversityPalo AltoCalifornia94305
Jenna Klotz, MD
408 426 5590
University of California, DavisSacramentoCalifornia95817
Craig McDonald, MD
916 734 7041
University of Florida Clinical and Translational Science InstitueGainesvilleFlorida32610
Julie Berthy, NP
352 273 8700
Nicklaus Children's HospitalMiamiFlorida33155
Migvis Monduy, MD
305 663 8330
Nemours Children's HospitalOrlandoFlorida32827
Omer Abdul Hamid, MD
407 650 7715
Johns Hopkins All Children's HospitalSt. PetersburgFlorida33701
Susan Dvojack
727-898-7451
Matias Lopez Chacon, MD (PRINCIPAL_INVESTIGATOR)
Lurie Children's Hospital of ChicagoChicagoIllinois60611
Nancy Kuntz, MD
312 227 4000
Indiana University Health - Riley Hospital for ChildrenIndianapolisIndiana46202
Marcia Felker, MD
317 278 7364
University of Kansas Medical CenterKansas CityKansas66205
Jeffrey Statland, MD
913 588 6970
University of Massachusetts Memorial Medical CenterNorth WorcesterMassachusetts01655
Stephen M. Chrzanowski, MD, PhD
(774) 441-7615
Helen DeVos Children's HospitalGrand RapidsMichigan49503
Jena Krueger, MD
616-447-5836
Atrium Health Neurosciences InstituteCharlotteNorth Carolina28207
Urvi Desai, MD
704 468 0101
Duke University Medical Center and Childrens Health CenterDurhamNorth Carolina27710
Mai ElMallah, MD
(919) 681-3364
Cincinnati Children's Hospital Medical CenterCincinnatiOhio45229
Cuixia Tian, MD
513 636 9285
Penn State Milton S. Hershey Medical Center- Penn State Hershey Neuroscience InstituteHersheyPennsylvania17033
Dustin Paul, MD
717-531-3828
Children's Hospital of Philadelphia (CHOP)PhiladelphiaPennsylvania19104
Sabrina Yum, MD
215 590 4719
University of Texas Southwestern Medical CenterDallasTexas75235
Kaitlin Batley, MD
214 456 9561
Neurology Rare Disease Center - Neurology & Neuromuscular Care CenterDentonTexas76208
Diana Castro, MD
972 982 7411
The University of Texas Health Science Center at San AntonioSan AntonioTexas78229
Matthew Wicklund, MD
210 450 0500
University of Virginia Health System (UVAHS) - Pediatric Neuromuscular CenterCharlottesvilleVirginia22903
Rebecca Scharf, MD
434 924 1647
Seattle Children's HospitalSeattleWashington98105
Seth Perlman, MD
206-987-0804
Children's WisconsinMilwaukeeWisconsin53226
Rebecca Rehborg
877-607-5280
Virginia Kaperick, MD (PRINCIPAL_INVESTIGATOR)

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