Scientific and medical researchers are invited to utilize the Alpha-1 Research Registry as a source for recruiting research subjects or to obtain specific medical and demographic information available from the Registry database.
What is the Alpha-1 Research Registry?
The Registry is a confidential database of over 3300 individuals with Alpha-1 Antitrypsin Deficiency (Alpha-1 or AAT Deficiency) or a carrier phenotype willing to participate in Alpha-1 research. The Registry was established in 1996 by the Alpha-1 Foundation in accordance with recommendations of the World Health Organization, to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1.
The Registry, a Resource for Investigators!
By establishing a database of individuals with Alpha-1 and promoting its use to the Alpha-1 research community, the goal of the Registry is to allow important research and new therapies to be evaluated in the United States. Scientific and medical investigators are invited to utilize the Registry as a source for recruiting research subjects or to obtain specific medical and demographic information available from the Registry database.
The information stored in the database is collected from a three-page enrollment questionnaire and includes self-reported birthdate, age of diagnosis, smoking status, phenotype, alpha-1 antitrypsin (AAT) protein level, clinical symptoms of disease, protein replacement therapy status, and transplant status. Registry members are asked to mail or fax their latest FEV1 test results from their physician. All research requests submitted to the Registry must be approved by the Alpha-1 Foundation’s Medical and Scientific Advisory Committee.
Strict procedures are employed to ensure that each member's personal information is protected. No member's identity is revealed to any researcher without that member's permission.
Registry members are never required to participate in any research trial.
The Registry is actively seeking new members! Registry growth will increase the Registry's desirability as a research tool and its ability to facilitate a wide variety of research initiatives. Both Alpha-1 carriers and individuals with AAT Deficiency are eligible. The Alpha-1 Foundation and Registry Staff are asking physicians to encourage their Alpha-1 patients to enroll in the Research Registry. Enrollment is as easy as completion of a three-page questionnaire! To obtain questionnaires, please call us toll free at 1-877-886-2383, or refer patients to our website.
Research requests should be submitted to the Registry Director, Charlie Strange, MD. Dr. Strange may be reached by email at firstname.lastname@example.org or by phone at 1-877-886-2383. The Alpha-1 Research Registry is located in the Department of Pulmonary, Critical Care Medicine, Allergy and Sleep Medicine at the Medical University of South Carolina in Charleston.
Last updated: April 23, 2013