Help Us Advance Alpha-1 Research
You can help us better understand 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 Alpha-1 Research Registry Research Update Newsletter with information on latest research activities.
The Registry is guided by an Advisory Committee composed of medical and scientific experts and patients. Patient participation in the Registry 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 the Alpha-1 Research Registry can enroll through the 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 following medical records, if possible. You are not required to provide medical records to join the Alpha-1 Research Registry.
- 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:
- USB flash drive
- Secure email
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.
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 Research Registry.
You can email your medical records electronic copies, screenshots, or pictures of your medical records to firstname.lastname@example.org
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 that are intended to protect the identity of those who participate. Registry data is housed in a secure database managed by the Alpha-1 Foundation. There is strict adherence to establish confidentiality procedures that are intended to protect the identity of those who participate. The Registry database is hosted by a HIPAA compliant party; a secure environment for data systems and servers.