Registry of Patients With a Diagnosis of Spinal Muscular Atrophy (SMA)

ClinicalTrials.gov ID: NCT04174157

Public ClinicalTrials.gov record NCT04174157. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.

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ClinicalTrials.gov public records Last synced Jun 26, 2026, 5:44 AM EDT

Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.

Official title

A Prospective, Long-Term Registry of Patients With a Diagnosis of Spinal Muscular Atrophy (SMA)

Study identification

NCT ID: NCT04174157
Recruitment status: Recruiting
Study type: Observational
Phase: Not listed
Lead sponsor: Novartis Pharmaceuticals; Industry
Enrollment: 700 participants

Conditions and interventions

Conditions

Spinal Muscular Atrophy (SMA)

Interventions

Prospective observational registry Other
Zolgensma Drug

Other · Drug

Eligibility (public fields only)

Age range: Not listed
Sex: All
Healthy volunteers: Healthy volunteers not accepted

This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.

Study timeline

Start date: Sep 24, 2018
Primary completion: Jun 29, 2038
Completion: Jun 29, 2038
Last update posted: Jan 30, 2025

2018 – 2038

United States locations

U.S. sites: 50
U.S. states: 26
U.S. cities: 48

Facility	City	State	ZIP	Site status
Phoenix Children's Hospital	Phoenix	Arizona	85016	Recruiting
Arkansas Children's Hospital	Little Rock	Arkansas	72202	Recruiting
Loma Linda University Health	Loma Linda	California	92350	Completed
Children's Hospital of Los Angeles	Los Angeles	California	90027	Recruiting
University of California Los Angeles Health	Los Angeles	California	90095	Recruiting
Valley Children's Healthcare	Madera	California	93636	Recruiting
Children's Hospital of Orange County	Madera	California	93638	Recruiting
University of California Davis Health System	Sacramento	California	95817	Recruiting
Rady Children's Hospital San Diego	San Diego	California	92123	Recruiting
Children's Hospital Colorado	Aurora	Colorado	80045	Recruiting
Connecticut Children's Medical Center	Farmington	Connecticut	06034	Recruiting
Yale-New Haven Health System	New Haven	Connecticut	06510	Recruiting
Golisano Children's Hospital of Southwest Florida	Fort Myers	Florida	33908	Recruiting
Nicklaus Children's Hospital	Miami	Florida	33155	Completed
Adventist Health System - Florida	Orlando	Florida	32803	Completed
Jackson South Medical Center	Palmetto Bay	Florida	33157	Recruiting
Indiana University Health University Hospital (IUHUH)	Indianapolis	Indiana	46202	Recruiting
University of Iowa	Iowa City	Iowa	52242-1009	Recruiting
University of Kansas Medical Center	Kansas City	Kansas	66160	Recruiting
University of Louisville	Louisville	Kentucky	40202	Recruiting
University of Minnesota	Minneapolis	Minnesota	55455	Recruiting
University of Missouri Health System	Columbia	Missouri	65212	Recruiting
Washington University School of Medicine in St. Louis	St Louis	Missouri	63110	Recruiting
Atlantic Health System	Morristown	New Jersey	07960	Recruiting
University of Rochester Medical Center	Rochester	New York	14642	Recruiting
The State University of New York	Stony Brook	New York	11794	Recruiting
Duke Health	Durham	North Carolina	27705	Recruiting
Akron Children's Hospital	Akron	Ohio	44308-1062	Completed
Cincinnati Children's Hospital Medical Center	Cincinnati	Ohio	45229-3026	Recruiting
University Hospitals	Cleveland	Ohio	44106	Completed
Nationwide Children's Hospital	Columbus	Ohio	43205	Recruiting
Oklahoma University Medical Center	Oklahoma City	Oklahoma	73104	Completed
Oregon Health and Science University	Portland	Oregon	97239-3098	Recruiting
Penn State Hershey	Hershey	Pennsylvania	17033	Recruiting
University of Pittsburgh Medical Center	Pittsburgh	Pennsylvania	15224	Recruiting
Prisma Health	Greenville	South Carolina	29615	Recruiting
Methodist Le Bonheur Healthcare	Memphis	Tennessee	38103	Recruiting
Child Neurology Consultants of Austin	Austin	Texas	78731	Completed
Children's Health	Dallas	Texas	75207	Completed
Cook Children's	Fort Worth	Texas	76104	Recruiting
Texas Children's Hospital	Houston	Texas	77030	Recruiting
CHRISTUS Health	San Antonio	Texas	78207	Recruiting
University of Utah	Salt Lake City	Utah	84113	Recruiting
University of Virginia Health System	Charlottesville	Virginia	22908	Recruiting
Children's Hospital of The King's Daughters	Norfolk	Virginia	23507	Recruiting
Virginia Commonwealth University Health System	Richmond	Virginia	23298	Recruiting
Seattle Children's	Seattle	Washington	98105	Recruiting
MultiCare Health System	Tacoma	Washington	98405	Recruiting
University of Wisconsin	Madison	Wisconsin	53792	Recruiting
Children's Hospital of Wisconsin	Milwaukee	Wisconsin	53226	Recruiting

Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.

Non-U.S. locations

This page focuses on the U.S. directory. The official record also lists 49 non-U.S. sites.

About this trial record page

What this page shows: Public field values for ClinicalTrials.gov record NCT04174157, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
What this page does not do: No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
Where the data comes from: Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
Last refresh: Last update posted Jan 30, 2025 · Synced Jun 26, 2026

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The complete protocol, eligibility criteria, and contact information for NCT04174157 live on ClinicalTrials.gov.

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