Join the Alpha-1 Research Registry

Help Us Advance Alpha-1 Research

You can help us better understand Alpha-1 Antitrypsin Deficiency (Alpha-1) and make important discoveries that may lead to new treatments and a cure. 

What is the Alpha-1 Research Registry?

The Alpha-1 Research Registry is a confidential database of people with Alpha-1 and Alpha-1 carriers.

The Alpha-1 Foundation created the Alpha-1 Research Registry to advance Alpha-1 research, including research into new treatments and, ultimately, a cure for the condition.

People enrolled in the Alpha-1 Research Registry have the option to participate directly in clinical trials of new treatments for Alpha-1.

In addition, people enrolled in the Alpha-1 Research Registry will receive the Research Update Newsletter with information on the latest research activities.

The Alpha-1 Research Registry is guided by an Advisory Committee composed of medical and scientific experts and patients. Patient participation is confidential.

Who is eligible to join the Alpha-1 Research Registry?

Anyone diagnosed with Alpha-1, including carriers and regardless of age, can enroll in the Alpha-1 Research Registry; children diagnosed with Alpha-1 can enroll with parent or guardian consent.  

Currently, the Alpha-1 Research Registry is only open to residents of the United States.

How do I enroll in the Alpha-1 Research Registry?

Anyone interested in joining can enroll through the Alpha-1 Research Registry Portal in a few easy steps: 

• Complete a registration form
• Read and sign the informed consent form
• Complete a questionnaire
• Upload medical records (optional)

What medical records are accepted by the Alpha-1 Research Registry?

We ask Alpha-1 Research Registry participants to provide up to 5 of their most recent medical records, if possible.  You are not required to provide medical records to join. 

• Pulmonary Function Test
• Liver Biopsy 
• Fibroscan (a non-invasive measure liver scarring or fibrosis)
• Lung and/or Liver Radiology reports (not the the scans or images themselves)
• Exercise test/6-minute walk test 
• Labs including INR, GGT, total cholesterol, triglycerides, HDL and LDL, and genotype report

Please note that you do not need to have any new tests performed or provide medical records to enroll in the Alpha-1 Research Registry.

How do I request medical records?

You can request your medical records from your healthcare provider in different formats, including:

• CD
• DVD
• USB flash drive
• Secure email
• Mail

You may be able to directly access your medical records through a patient portal.

There may be a fee when obtaining your medical records from your healthcare provider. The Alpha-1 Foundation will reimburse you up to $25 for the expense after your medical records reports are received.

If you have any questions, please call 1-877-228-7321, ext. 252 or 245 or email alpha1registry@alpha1.org

How do I send you my medical records? 

Once you have obtained your medical records, you can upload electronic copies, screenshots, or pictures of your reports to the Alpha-1 Research Registry. 

You can email your medical records electronic copies, screenshots, or pictures of your medical records to alpha1registry@alpha1.org

Alpha-1 Foundation

Attn: Alpha-1 Research Registry Coordinator

3300 Ponce de Leon Blvd Coral Gables, FL 33134

Who will have access to my name? 

The Alpha-1 Research Registry is required to conceal a participant’s identity and personal information from researchers and organizations unless consent is granted. 

How is my privacy protected? 

Alpha-1 Research Registry uses established confidentiality procedures to protect the identity of those who participate. Data is housed in a secure database managed by the Alpha-1 Foundation. The database is hosted by a HIPAA-compliant party, a secure environment for data systems and servers.

For more information about the Alpha-1 Research Registry, call 1-877-228-7321, extension 252 or 245 or email alpha1registry@alpha1.org