Clinical trialNCT01346150UnknownObservational

Patients Treated for SCID (1968-Present)

SponsorNational Institute of Allergy and Infectious Diseases (NIAID)Enrollment1,007ADA-SCIDLeaky SCIDOmenn SyndromeReticular DysgenesisSCIDXSCID

View the registry record on ClinicalTrials.gov

Summary

The lay summary the sponsor registered on ClinicalTrials.gov.

Individuals with a past diagnosis of severe combined immune deficiency (including many cases of "leaky SCID", Omenn syndrome, and reticular dysgenesis) who have undergone blood and marrow transplant, gene therapy, or enzyme replacement in the past may be eligible for this study. The purpose of study is to look backwards at what has already been done in the. Over 800 patients with SCID are expected to be enrolled, making this one of the largest studies ever to describe outcomes for patients with SCID treated at many different hospitals around North America.

clinicaltrials.gov ↗

Investigators

The overall officials registered on this study. Names that resolve to a findmyKOL profile link to it; the rest are shown as registered.

Elie Haddad, MD, PhD
University of Montréal, CHU Sainte-Justine
Study Chair
clinicaltrials.gov ↗
Morton J. Cowan, MD
University of California, San Francisco
Study Chair
clinicaltrials.gov ↗
Richard J. O'Reilly, MD
Memorial Sloan Kettering Cancer Center
Study Chair
clinicaltrials.gov ↗

A profile link is shown only when the registered name resolves to a person record with a confident, namesake-checked match; ambiguous names stay unlinked.

Sites

36 registered facilities, with the per-site recruitment status where the registry publishes one. ClinicalTrials.gov does not publish per-site enrollment counts.

Canada

Alberta Children'S Hospital
Calgary, Alberta, Canada
British Columbia Children'S Hospital
Vancouver, British Columbia, Canada
Cancer Care Manitoba
Winnipeg, Manitoba, Canada
the Hospital for Sick Children (sickkids)
Toronto, Ontario, Canada
Chu St. Justine
Montreal, Quebec, Canada

United States

University of Alabama at Birmingham
Birmingham, Alabama, United States
Children'S Hospital Los Angeles
Los Angeles, California, United States
Mattel Children'S Hospital Ucla: Division of Pediatric Hematology/oncology
Los Angeles, California, United States
Lucile Salter Packard Children'S Hospital at Stanford
Palo Alto, California, United States
University of California San Francisco Children'S Hospital
San Francisco, California, United States
Children'S Hospital Denver:center for Cancer and Blood Disorders
Denver, Colorado, United States
Children'S National Medical Center
Washington D.C., District of Columbia, United States
Johns Hopkins All Children'S Hospital
St. Petersburg, Florida, United States
Children'S Healthcare of Atlanta/emory University School of Medicine
Atlanta, Georgia, United States
Lurie Children'S Hospital of Chicago
Chicago, Illinois, United States
Children'S Hospital/louisiana State University Health Sciences Center
New Orleans, Louisiana, United States
Nih Clinical Center Genetic Immunotherapy Section
Bethesda, Maryland, United States
Children'S Hospital Boston
Boston, Massachusetts, United States
University of Michigan Health System
Ann Arbor, Michigan, United States
University of Minnesota Medical Center
Minneapolis, Minnesota, United States
Ssm Cardinal Glennon Children'S Medical Center
St Louis, Missouri, United States
Washington University St Louis Children'S Hospital
St Louis, Missouri, United States
Hackensack University Medical Center: Department of Pediatrics
Hackensack, New Jersey, United States
Memorial Sloan-Kettering Cancer Center: Department of Pediatrics
New York, New York, United States
Duke University Medical Center: Department of Pediatrics, Division of Allergy/immunology
Durham, North Carolina, United States
Cincinnati Children'S Hospital Medical Center
Cincinnati, Ohio, United States
Oregon Health & Science University: Pediatric Hematology/oncology
Portland, Oregon, United States
the Children'S Hospital of Philadelphia
Philadelphia, Pennsylvania, United States
St. Jude Children'S Research Hospital
Memphis, Tennessee, United States
University of Texas Southwestern Medical Center Dallas
Dallas, Texas, United States
Texas Children'S Hospital
Houston, Texas, United States
Methodist Children'S Hospital of South Texas
San Antonio, Texas, United States
Primary Children'S Medical Center/university of Utah
Salt Lake City, Utah, United States
Fred Hutchinson Cancer Research Center: Clinical Research Division and Pediatric Stem Cell Transplantation Center
Seattle, Washington, United States
University of Wisconsin/ American Family Children'S Hospital
Madison, Wisconsin, United States
Medical College of Wisconsin
Milwaukee, Wisconsin, United States

Site investigator names are published by ClinicalTrials.gov only while a study recruits, so completed studies list sites without them.

Drugs studied

No drug or biological interventions are in our data for this study. It may test a procedure, device or behavioral intervention, or the intervention list isn't in our current snapshot. See the registry record ↗. Why? →

Registration & key dates

Registry attributes as recorded on the ClinicalTrials.gov study record.

Start: 15 May 2011
Primary completion: 31 Aug 2023
Completion: 31 Aug 2023
Last update posted: 12 Nov 2020
Registered enrollment: 1,007
Registry id: NCT01346150

clinicaltrials.gov ↗

Source: ClinicalTrials.gov, via the CTTI AACT database, data as of 24 Aug 2026. Registry facts are shown as registered by the study sponsor; findmyKOL does not interpret them.