International Registry of Patients With Alpha Thalassemia

  • STATUS
    Recruiting
  • End date
    Jan 9, 2037
  • participants needed
    500
  • sponsor
    University of California, San Francisco
Updated on 10 October 2021
cell transplantation
ATM
alpha-thalassemia

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.

Description

The aim of this registry is to prospectively and retrospectively collect data on patients who are diagnosed with alpha thalassemia major and other alpha thalassemia mutations. Data collected will be used to:

  1. Identify patient outcomes of therapies.
  2. Improve clinical management of patients with ATM.
  3. Improve medical decision making.
  4. Improve quality of care.

Details
Condition Alpha Thalassemia Minor, alpha-thalassemia, Alpha thalassemia, Alpha Thalassemia Major, Thalassemia
Clinical Study IdentifierNCT04872179
SponsorUniversity of California, San Francisco
Last Modified on10 October 2021

Eligibility

Yes No Not Sure

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
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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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