You have probably heard of the Alpha-1 Research Registry, but what exactly is it? And how does it benefit the Alpha-1 community? Read on to learn more about the Research Registry and why you should join.
What is a Research Registry?
Research registries are used to quickly and easily identify patients eligible to participate in clinical trials or research studies. Registries are able to provide researchers with accurate estimates of a particular condition’s prevalence, natural history, and help answer a multitude of disease or condition-related questions. Research registries can be particularly useful for those studying rare conditions (like Alpha-1!) as research participants can often be much more difficult to source from the general population.
What is the Alpha-1 Research Registry?
The Alpha-1 Research Registry is a secure, confidential database made up of individuals diagnosed with Alpha-1 as well as individuals identified as Alpha-1 carriers. The purpose of the Registry is to provide a resource to facilitate research projects, to promote the development of improved treatments, and to ultimately find a cure for Alpha-1. Individuals enrolled in the Registry have the chance to participate in research opportunities like clinical trials for new therapeutic approaches, genetic studies, screening, diagnostic research, and more.
The Alpha-1 Research Registry is under the direction of Dr. Jeanine D’Armiento, Chair of the Alpha-1 Foundation’s Board of Directors and is being overseen by the New England Institutional Review Board (NEIRB). The NEIRB ensures that the Research Registry adheres to the correct protocols to safeguard the rights and welfare of all Registry participants and that the research conducted through the Registry is credible. When you join the Alpha-1 Research Registry you can be sure that your privacy is carefully guarded, and your information is kept secure.
Who is Eligible?
The Alpha-1 Research Registry is currently open to United States residents only, international individuals are not eligible to participate at this time. Alphas and Alpha-1 carriers of all ages in the U.S. are welcome to join the Research Registry.
Why Should I Enroll?
Joining the Alpha-1 Research Registry is beneficial to individual Alphas as well as the entire Alpha-1 community. As an individual, you will have an opportunity to learn more about your own Alpha-1 health, potentially have access to early Alpha-1 treatment options, and be connected to a team of physicians and researchers who are experts in Alpha-1. You will also be contributing to a body of research that aims to improve the quality of life for all Alphas and, above all, find a cure for Alpha-1.
How Do I Enroll?
You can enroll in the Alpha-1 Research Registry entirely online by accessing the Alpha-1 Research Registry Portal here. The enrollment process includes:
- Completing a registration form. This form provides the Registry with your basic demographic information. If you are the parent or guardian of a minor who will be participating, we ask that you provide the minor’s first and last name and the parent or guardian’s contact information.
- Reading and signing the adult or parental consent form. Signing the informed consent is essential to your participation in the Research Registry. You are not considered a participant in the Research Registry unless you sign an informed consent. Individuals who sign informed consents are contacted for participation in clinical trials. After you have reviewed your information, you will have the option of downloading and/or printing your informed consent and keeping a copy for your records.
- Completing the Questionnaire. You will have the option to save your response 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.
If you have any questions, require assistance in completing the enrollment process, or would like to request hard-copies of any of the enrollment forms, please contact the Alpha-1 Foundation at 877-228-7321 ext. 252 or email at alpha1registry@alpha1.org.
Sources:
https://www.alpha1.org/alphas-friends-family/resources/participate-in-research/