Natural History Study of SCID Disorders
Public ClinicalTrials.gov record NCT01186913. 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.
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 Natural History Study of Diagnosis, Treatment and Outcomes of Children With SCID Disorders (RDCRN PIDTC-6901)
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
This study is a prospective evaluation of children with Severe Combined Immune Deficiency (SCID) who are treated under a variety of protocols used by participating institutions. In order to determine the patient, recipient and transplant-related variables that are most important in determining outcome, study investigators will uniformly collect pre-, post- and peri-transplant (or other treatment) information on all children enrolled into this study. Children will be divided into three strata: * Stratum A: Typical SCID with virtual absence of autologous T cells and poor T cell function * Stratum B: Atypical SCID (leaky SCID, Omenn syndrome and reticular dysgenesis with limited T cell diversity or number and reduced function), and * Stratum C: ADA deficient SCID and XSCID patients receiving alternative therapy including PEG-ADA ERT or gene therapy. Each Group/Cohort Stratum will be analyzed separately.
Study identification
- NCT ID
- NCT01186913
- Recruitment status
- Enrolling by invitation
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 690 participants
Conditions and interventions
Conditions
Interventions
Not listed
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 2, 2010 (Actual)
- Primary completion
- Sep 2028 (Estimated)
- Completion
- Sep 2028 (Estimated)
- Last update posted
- Nov 10, 2020
2010 – 2028
United States locations
- U.S. sites
- 39
- U.S. states
- 26
- U.S. cities
- 37
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| University of Alabama at Birmingham | Birmingham | Alabama | 35233 | — |
| Phoenix Children's Hospital | Phoenix | Arizona | 85016 | — |
| Children's Hospital Los Angeles | Los Angeles | California | 90027 | — |
| University of California, Los Angeles | Los Angeles | California | 90095-1752 | — |
| Lucile Salter Packard Children's Hospital at Stanford | Palo Alto | California | 94304 | — |
| University of California San Francisco Children's Hospital | San Francisco | California | 94143-1278 | — |
| Children's Hospital Denver | Denver | Colorado | 80220 | — |
| Alfred I. duPont Hospital for Children/Nemours | Wilmington | Delaware | 19803 | — |
| Children's National Medical Center | Washington D.C. | District of Columbia | 20010-2970 | — |
| Johns Hopkins All Children's Hospital | St. Petersburg | Florida | 33701 | — |
| Children's Healthcare of Atlanta/Emory University School of Medicine | Atlanta | Georgia | 30322 | — |
| Ann & Robert H. Lurie Children's Hospital of Chicago | Chicago | Illinois | 60614 | — |
| Children's Hospital/Louisiana State University Health Sciences Center | New Orleans | Louisiana | 70118 | — |
| NIH Clinical Center Genetic Immunotherapy Section | Bethesda | Maryland | 20892 | — |
| Children's Hospital Boston | Boston | Massachusetts | 02115 | — |
| University of Michigan Health System | Ann Arbor | Michigan | 48109 | — |
| University of Minnesota Medical Center | Minneapolis | Minnesota | 55455 | — |
| Mayo Clinic Hospital | Rochester | Minnesota | 55905 | — |
| Cardinal Glennon Children's Medical Center | St Louis | Missouri | 63104 | — |
| Washington University St Louis Children's Hospital | St Louis | Missouri | 63110 | — |
| Hackensack University Medical Center | Hackensack | New Jersey | 07601 | — |
| Memorial Sloan-Kettering Cancer Center | New York | New York | 10065 | — |
| University of Rochester Medical Center/ Golisano Children's Hospital | Rochester | New York | 14642 | — |
| New York Medical College, Maria Fareri Children's Hospital | Valhalla | New York | 10595 | — |
| Duke University | Durham | North Carolina | 27710 | — |
| Cincinnati Children's Hospital Medical Center | Cincinnati | Ohio | 45229 | — |
| University Hospitals-Rainbow Babies and Children's Hospital | Cleveland | Ohio | 44106 | — |
| Nationwide Children's Hospital | Columbus | Ohio | 43205 | — |
| Oregon Health and Science University | Portland | Oregon | 97239-3098 | — |
| The Children's Hospital of Philadelphia | Philadelphia | Pennsylvania | 19104 | — |
| Children's Hospital of Pittsburgh of UPMC | Pittsburgh | Pennsylvania | 15224 | — |
| St. Jude Children's Research Hospital | Memphis | Tennessee | 38105 | — |
| University of Texas Southwestern Medical Center/Children's of Dallas | Dallas | Texas | 75390-9263 | — |
| Texas Children's Hospital | Houston | Texas | 77030-2399 | — |
| Methodist Children's Hospital of South Texas/Texas Transplant Institute | San Antonio | Texas | 78229 | — |
| Primary Children's Medical Center/University of Utah | Salt Lake City | Utah | 84113 | — |
| Seattle Children's Research Institute | Seattle | Washington | 98101 | — |
| University of Wisconsin/ American Family Children's Hospital | Madison | Wisconsin | 53705-2275 | — |
| Medical College of Wisconsin | Milwaukee | Wisconsin | 53226-4874 | — |
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 5 non-U.S. sites.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT01186913, 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 Nov 10, 2020 · Synced Oct 21, 2026
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Open the official record
The complete public registry record, listed eligibility criteria, and available contact information for NCT01186913 live on ClinicalTrials.gov.