What is the Alpha-1 Foundation Research Registry?

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The Alpha-1 Foundation Research Registry is a confidential database made up of individuals diagnosed with Alpha-1 and individuals identified as Alpha-1 carriers. The Registry was established in 1997 by the Alpha-1 Foundation to aid research initiatives and promote the development of improved treatments and a cure for alpha-1 antitrypsin deficiency. Located at the Medical University of South Carolina (MUSC) in Charleston, the registry employs procedures that ensure the most stringent confidentiality of participants. Individuals enrolled in the Registry have the ongoing opportunity to participate directly in clinical trials of new therapeutic approaches in addition to other research opportunities.

Significant research over the past five decades has led to advances in our understanding of Alpha-1 genetics, lung, and liver disease.  However, increased research is necessary to find a cure for Alpha-1. Research also helps find better means of detecting Alpha-1, can give us a better understanding of what causes emphysema and/or liver disease, and help us fully understand and improve the social implications of having Alpha-1.

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Who is Eligible to Enroll in the Registry?

Individuals of all ages who are diagnosed with alpha-1 antitrypsin deficiency and individuals identified as carriers of at least one alpha-1 antitrypsin deficiency allele are encouraged to enroll in the Research Registry.

How do I Enroll in the Registry?

Simply fill out the 4-page Questionnaire! This can be done by mail or online. If you know of others interested in enrolling in the Registry please refer them to the Alpha-1 Registry web site or have them call the Registry Coordinating Center toll free in Charleston at 1-877-886-2383 for information.

How Can My Participation Help Promote Research?

One of the largest obstacles in Alpha-1 research is finding a sufficient number of volunteers to participate in studies. By establishing a database of thousands of people with Alpha-1 and promoting its use to the Alpha-1 research community, the Registry will allow new therapies and important research studies to be evaluated. Through the voluntary participation of registry members, basic scientific questions about Alpha-1 can be answered.  These allow a more thorough understanding of the disorder and its impact on affected individuals.

Participation in research is voluntary and Registry members are always given the option to accept or decline research invitations. The Registry accepts different levels of commitment to research from its members. Simply filling out the enrollment questionnaire provides the Registry with valuable research material on the numbers of patients diagnosed with Alpha-1 and their clinical symptoms of disease. Your enrollment helps because the ability to contact a large number of Alphas motivates medical and scientific investigators to conduct important research in Alpha-1 otherwise thought impossible due to an insufficient number of available participants.

The Benefits of Joining the Registry

  • Opportunity to participate in clinical trials for new treatments.
  • Opportunity to participate in survey studies to determine health care costs, environmental risks, and assist in collection of other specific data to advance scientific and medical knowledge about Alpha-1.
  • Access to experts in Alpha-1 clinical care through participation in clinical trials.
  • Bi-annual Research Registry Update Newsletter with information on the latest research activities.
If You Have Questions Please contact the Alpha-1 Research Registry for more information.
Toll free: 1-877-886-2383
Email: alphaone@musc.edu
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