RECRUITING

Alpha-1 Research Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

Alpha-1 Research Registry Protocol

Quick Facts

Study Start:2019-06-20
Study Completion:2029-06-20
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04157049

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Patients diagnosed with Alpha-1 Antitrypsin Deficiency (PiZZ, PiZNull, PiSZ etc.)
  2. * Alpha-1 carriers (PiMZ, PiMS etc.)
  1. * Failure to provide informed consent
  2. * Normal healthy individuals (MM)

Contacts and Locations

Study Contact

Alison Keaveny, MBBS
CONTACT
1-877-228-7321
akeaveny@alpha1.org
Randel Plant
CONTACT
1-877-228-7321
rplant@alpha1.org

Study Locations (Sites)

Alpha-1 Foundation
Coral Gables, Florida, 33134
United States

Collaborators and Investigators

Sponsor: Alpha-1 Foundation

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2019-06-20
Study Completion Date2029-06-20

Study Record Updates

Study Start Date2019-06-20
Study Completion Date2029-06-20

Terms related to this study

Keywords Provided by Researchers

  • AATD
  • ALPHA 1
  • COPD
  • AAT
  • ZZ
  • MZ
  • CARRIER
  • MM
  • MS
  • PiZZ

Additional Relevant MeSH Terms

  • Alpha 1-Antitrypsin Deficiency