RecruitingNot Applicable

International Registry of Patients With Alpha Thalassemia

United States500 participantsStarted 2017-01

Plain-language summary

This is an international prospective registry of patients with Alpha thalassemia to understand the natural history of the disease and the outcomes of fetal therapies, with the overall goal of improving the prenatal management of patients with Alpha thalassemia.

Who can participate

SexALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * diagnosis of alpha thalassemia (prenatal or postnatal) with genotype consistent with ATM or BHFS phenotype * referred to the University of California, San Francisco Fetal Treatment Center for fetal diagnosis, management and/or evaluation for the ongoing in utero stem cell transplantation clinical trial Exclusion Criteria: \- none

What they're measuring

Survival to birth

Timeframe: 6 months

Vineland-3 Adaptive Behavior Scale

Timeframe: 10-15 years

Trial details

NCT IDNCT04872179

SponsorUniversity of California, San Francisco

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2027-01

Contact for this trial

Billie Lianoglou, LCGC

(415) 476-2461 billie.lianoglou@ucsf.edu

View on ClinicalTrials.gov More Alpha-Thalassemia trials