Angelman Syndrome Natural History Study

Part of paid clinical trials in Los Angeles, California.

Sponsor
Boston Children's Hospital
Study ID
NCT04507997
Status
Recruiting
Apply to this trial

Conditions

  • Angelman Syndrome

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

The goal of this study is to conduct a prospective, longitudinal natural history study of children and adults with Angelman Syndrome using investigator-observed and parent-reported outcome measures to obtain data that will be useful for future clinical trials.

Key Dates

Start date
Aug 1, 2018
Status verified
Mar 2025
Primary completion
Apr 30, 2031
Completion
Apr 30, 2031

Study Design

Enrollment
300 participants (estimated)

Primary Outcome Measure

Medical History [ Time Frame: Through study completion, an average of 1 year ]

Central Contacts

Locations (8)

FacilityCityStateZIPSite coordinators
Cedars-Sinai Guerin Children'sLos AngelesCalifornia90048
Cesar Ochoa-Lubinoff, MD, MPH (PRINCIPAL_INVESTIGATOR)
Rady Children's Hospital, San DiegoSan DiegoCalifornia92123
Rachel Winograd, RN
[email protected]
858-966-8453
Lynne M. Bird, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital Colorado, Anschutz Medical CampusAuroraColorado80045
Jen Sargent, MA
[email protected]
720-777-4719
Diana Walleigh, MD (PRINCIPAL_INVESTIGATOR)
Emory University School of MedicineAtlantaGeorgia30322
Aleana Lim, MS, CGC
[email protected]
404-778-0832
Amy L. Talboy, MD (PRINCIPAL_INVESTIGATOR)
Rush University Children's HospitalChicagoIllinois60612
Margaret Porwit, BA
[email protected]
312-942-0079
Elizabeth Berry-Kravis, MD, PhD (PRINCIPAL_INVESTIGATOR)
Boston Children's HospitalBostonMassachusetts02115
Wen-Hann Tan, BMBS
[email protected]
Maddie Gramling, BS
[email protected]
617-355-2030
The Carolina Institute for Developmental DisabilitiesCarrboroNorth Carolina27510
Hannah Riehl, MA
[email protected]
919-962-8462
Margaret DeRamus, MS, CCC-SLP (PRINCIPAL_INVESTIGATOR)
Monroe Carell Jr. Children's Hospital at VanderbiltNashvilleTennessee37232
Kaylee Lynch, BA
[email protected]
615-517-8225
Robert Carson, MD, PhD (PRINCIPAL_INVESTIGATOR)

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By research site
Cedars-Sinai Guerin Children's· Los Angeles, CARady Children's Hospital, San Diego· San Diego, CAChildren's Hospital Colorado, Anschutz Medical Campus· Aurora, COEmory University School of Medicine· Atlanta, GARush University Children's Hospital· Chicago, ILBoston Children's Hospital· Boston, MA

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