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What is the Alpha-1 Research Registry?

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. Located at the Alpha-1 Foundation, Miami, FL, the Registry employs procedures that ensure the most stringent confidentiality of participants. The Registry is under the direction of Dr. Jeanine D’Armiento, Chair of the Alpha-1 Foundation’s Board of Directors and is guided by an Advisory Committee comprised of leaders in the medical, ethical, scientific and Alpha communities. 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.

Who is eligible to enroll in the Registry?

  • Individuals of all ages who are diagnosed with Alpha-1.
  • Individuals identified as carriers of Alpha-1.
  • The Alpha-1 Research Registry is currently open to residents of the United States only. International individuals are not eligible to join at this time.

How do I enroll in the Registry?

Individuals interested in joining the Alpha-1 Research Registry can enroll in one of three ways: via the Registry Portal, via hard copy or via DocuSign™.

OPTION 1: Alpha-1 Research Registry Portal

 

To join the Alpha-1 Research Registry, visit the Registry Portal page by clicking on the following link: Research Registry Portal

STEP 1: Complete the Registration Form

  • All participants interested in joining the Alpha-1 Research Registry must complete a registration form.
  • If you are the parent or guardian who will be enrolling your child or minor in the Research Registry, please provide your contact information.

STEP 2: Read and Sign the Adult or Parental Informed Consent

  • Please read and review the informed consent.
  • If you are the parent or guardian enrolling a child or minor in the Alpha-1 Research Registry, please provide your email address and provide your child or minor’s name.
  • You will have an opportunity to review your informed consent and responses.
  • After you have reviewed your informed consent, you will have the option of downloading and/or printing it and keeping a copy for your records. 

STEP 3: Complete the Questionnaire

  • Answer all the questions to the best of your ability.
  • You will have the option to save your responses and return to the questionnaire at any time if you are unable to complete the questionnaire in one sitting.
  • At the end of the questionnaire, you will have the option to download a copy of your completed questionnaire for your records.

 STEP 4: Provide Medical Tests and Labs

  • The Alpha-1 Foundation is currently working on the portal to enable you to provide various medical tests and labs you have already had performed. Once this mechanism is available, the Alpha-1 Foundation will notify you to start the process of providing medical tests and labs.

If you have any questions, please call the Alpha-1 Research Registry at 877-228-7321 ext. 252 or email at alpha1registry@alpha1.org.

OPTION 2: Request a Hard Copy

If you are unable to complete the informed consent and questionnaire through the Registry Portal and would like to request a hard copy of the informed consent or questionnaire, you can call the Alpha-1 Research Registry department at 1-877-228- 7321 ext. 252 or email at alpha1registry@alpha1.org.

OPTION 3: DocuSign™ and Download Questionnaire

 Simply sign the informed consent and complete the Registration Form contained in one the following links. We are using DocuSign™ as the means to sign informed consents online. DocuSign™ is a HIPAA compliant partner.

STEP 1: Instructions for signing the informed consent and completing the Contact Information Form:

Click on one of the following links:

  1. You will be prompted to provide your name and email address. Enter each and click Begin Signing.
  2. You will be prompted to verify your email address. Check your email account for an email from DocuSign™ containing a validation code.
  3. After your email is validated, you will be brought to the informed consent.
  4. Read the informed consent. If you agree to participate in the Alpha-1 Research Registry, answer questions 1-9 by clicking the appropriate check boxes.
  5. Click on the Sign sticky. A computer-generated signature will be created for you. Click Adopt and Sign.
  6. Lastly, complete the Alpha-1 Registration Form.
  7. After you have answered the questions, signed the informed consent and completed the Registration Form, click Finish at the bottom of the webpage.
  8. You will be prompted with the option of printing or downloading the partially signed informed consent. The Alpha-1 Foundation Research Registry staff will sign the second portion of the informed consent.

 Step 2: Complete the Alpha-1 Reseach Registry Questionnaire

  1. Click the following link: Alpha-1 Research Registry Questionnaire
  2. Print the questionnaire and answer all of the questions.
  3. Mail the completed questionnaire to the following address:

Alpha-1 Research Registry

c/o: Alpha-1 Foundation

3300 Ponce de Leon Boulevard

Coral Gables, FL 33134

The Alpha-1 Foundation’s Registry staff will input the data you provided in the questionnaire into the Registry database. We are in process of developing the medical records portion of the portal. We will inform when it is available.

 STEP 3: Provide Medical Tests and Labs

  • The Alpha-1 Foundation is currently working on the portal to enable you to provide various medical tests and labs you have already had performed. Once this mechanism is available, the Alpha-1 Foundation will notify you to start the process of providing medical tests and labs.

If you have any questions, please call the Alpha-1 Research Registry at 877-228-7321 ext. 252 or email at alpha1registry@alpha1.org.

 

Who will have access to my name? How confidential is this database?

There is strict adherence to established confidentiality procedures that are intended to protect the identity of those who participate. The Registry is required to conceal a member’s identity and personal information from researchers and organizations unless consent is granted by the Registry member. The database is kept under tight security at all times. This means that it is password protected and inaccessible from the Internet. Also, all hard copies of personal information are kept under lock and key. Only the Registry staff at the Alpha-1 Foundation have access to a member’s personal 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 individuals with Alpha-1 and promoting its use to the Alpha-1 research community, the Registry provides a resource for the clinical trials and the development of new therapies and treatments. Participation in research is voluntary and Registry members are always given the option to accept or decline research invitations.

 

The benefits of joining the Alpha-1 Research Registry:

  • Participate in clinical trials for new treatments.
  • Be part of 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.
  • Update Newsletter with information on latest research activities.

 

What should I do if I have signed an informed consent since June 2019?

Individuals who have signed an informed consent since June of 2019 either at the Alpha-1 National Conference, via DocuSign™, or via mail, your informed consent is on file at the Alpha-1 Foundation. A separate email will be sent to you with a link to register for the Alpha-1 Research Registry and complete the patient questionnaire.

 

If I was enrolled in the registry at the Medical University of South Carolina, how does that affect my participation in the new Alpha-1 Research Registry at the Alpha-1 Foundation?

Even if you were enrolled in the Alpha-1 Registry at the Medical University of South Carolina, you will need to sign an informed consent to participate in the Alpha-1 Research Registry at the Alpha-1 Foundation. The Alpha-1 Research Registry is collecting more robust data that may be valuable to researchers and investigators.

For more information, please contact the Alpha-1 Research Registry at 877-228-7321 ext. 252 or alpha1registry@alpha1.org

The Alpha-1 Coded Testing (ACT) Study

The goal of the ACT Study is to provide free, confidential testing services and facilitate research on genetic testing. The test is administered through a research study which evaluates perceived risks and benefits of genetic testing. Anyone can ask to be tested. The ACT Study provides a way for family members of Alphas and others at risk to learn their Alpha-1 genotype.  The ACT Study is sponsored by the Alpha-1 Foundation and conducted by the University of Florida. For more information, contact the University of Florida at alpha1lab@alphaone.ufl.edu or call toll free 1-855-476-1227.

 

For more information about the Alpha-1 Research Registry, please contact the Alpha-1 Foundation at 877-228-7321 ext. 252 or alpha1registry@alpha1.org. 

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