Alpha-1 Research Registry

Clinical Trial ID: NCT04157049

Description

The Alpha-1 Research Registry is a confidential database made up of individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and individuals identified as Alpha-1 carriers. The Registry was established to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1.

The purpose of the Alpha-1 Research Registry will be to obtain uniform, longitudinal, complete and accurate data that can be organized, de-identified (satisfying HIPAA safe harbor rules for the USA) and made available for the public to query. Updates from patients' medical information will provide objective data-points to measure the progression of disease. The goal of the Alpha-1 Research Registry is to build a clinical research registry that can meet the challenges of multiple competing research trials that require large numbers of AATD individuals. The Alpha-1 Research Registry will enroll individuals with AATD including carrier phenotypes.


Criteria

Inclusion Criteria: - Patients with Alpha-1 Antitrypsin deficiency (ZZ) - Alpha-1 carrier (MS) Exclusion : - Failure to provide informed consent. - Normal healthy individuals (MM)

  • Start Date

    2019-06-20

  • Last Updated

    2019-11-13

  • Sponsor

    Alpha-1 Foundation

  • Condition Name

    Alpha 1-Antitrypsin Deficiency

Learn about this trial.

Check the eligibility requirements, study details, and more.

Related Trials

Different trials target different symptoms, condition types, and patients. Learn more about other emergeing treatments being investigated now.