Alpha-1 Foundation Research Registry
The Alpha-1 Foundation Research Registry at the Medical University of South Carolina is a confidential database of Alphas and Alpha-1 carriers across the country who are willing to participate in research. This can include something as grand as enlisting in a clinical trial to test new drugs or therapies – or something small, like filling out a research questionnaire. The process begins when an investigator, researcher, or drug company contacts the Registry and describes the type of research they would like to conduct. The Registry then looks through the patient database to see who qualifies for the study. If you are enrolled in the Registry and you qualify, the Registry will then send you an invitation letter, giving you the opportunity to participate.
The decision is always yours, whether you choose to take part in any study, or not.
The goal of the Registry is to encourage Alpha-1 research. Since Alpha-1 is relatively rare, a registry with a large number of Alphas makes it much easier and faster for scientists to carry out research studies. By joining the Registry, you can help to find better treatments and a cure for Alpha-1. Only the Registry will contact you; no one else will ever receive your personal information. The Registry is conducted under the direction of Charlie Strange, MD, at the Medical University of South Carolina.
Are you enrolled in the Research Registry?
Many Alphas and carriers believe they’re enrolled in the Research Registry, when actually they are not. (It’s NEVER automatic. It’s your choice.) To find out, or learn more, visit www.alphaoneregistry.org, email firstname.lastname@example.org or call toll free, (877) 886-2383. Or you can Enroll Now.
To read Research Registry Update newsletters, click here. Join the Registry using the contact information above, and receive a free subscription to the Update.
What is a clinical trial?
Clinical trials are research studies performed on human subjects. Studies conducted on animals, in test tubes, or using various other laboratory techniques are often called basic research. Clinical trials may include studies to evaluate the course of a disease, its cause or treatment.
Testing of new drugs or therapies is often the most visible and tantalizing type of clinical trial. In the U.S., clinical trials that evaluate a new drug or pharmaceutical therapy fall under very strict regulation by the Food and Drug Administration (FDA). The FDA decides whether the studies performed show that a drug is effective enough and safe enough to warrant broad distribution of the drug to patients.
There are many Alpha-1 clinical trials going on that do not involve the testing of new drugs or therapies, many supported by the Alpha-1 Foundation. One of the best ways to find out about these studies is to make sure you’re enrolled in the Alpha-1 Research Registry.
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. Enrollment into the study may end at any time. The ACT Study is conducted under the direction of Charlie Strange, MD, at the Medical University of South Carolina. For more information, visit the website www.alphaoneregistry.org, email email@example.com or call toll free, 877-886-2383.
International listing of Alpha-1 research studies
The U.S. National Institutes of Health (NIH) lists Alpha-1 research studies in the United States and around the world at ClinicalTrials.gov.
The NIH describes the site at the top of its Home page:
ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.
You can find clinical trials for Alpha-1 by typing “Alpha-1 Antitrypsin Deficiency” into the search box. (You can just type “Alpha-1″ and get a lot of results — but many trials will appear that have nothing to do with Alpha-1 Antitrypsin Deficiency.)
Please note the important NIH caution if you should consider volunteering for one of these studies: “This information should be used in conjunction with advice from health care professionals.” It’s always a good idea for an Alpha to see a doctor who’s familiar with Alpha-1, and discuss the risks and benefits before joining a clinical trial.
Also keep in mind that many of these clinical trials will not be available in your area and that you may not qualify for them. If you are a member of the Alpha-1 Research Registry, that research is already done before you get a notice about a new trial.