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HOW CAN I PARTICIPATE IN ALPHA-1 RESEARCH WITH MY FAMILY MEMBERS?
The Alpha-1 Foundation together with the Research Registry has devised a method to to link family member records within the Registry database in order to facilitate the study of Alpha-1 genetics. With the completion of the Human Genome project genetic studies hold great potential to shed light on unanswered questions in Alpha-1 such as why some individuals with the same Alpha-1 phenotype and similar smoking histories experience differences in severity of disease.
Since families have a high percentage of identical genes, family participation in genetic studies
will allow researchers to isolate small differences in a family's genetic code, thus generating genes of interest for study.
Genes found to influence the progression or severity of Alpha-1 then become targets for developing new drugs and therapies. Recognizing that pressures to participate in the Registry and individual studies can affect family dynamics the procedure in place seeks to protect the individual decisions made by each family member.
Registry members with family members interested in joining the Research Registry should contact the Registry Data Coordinating Center to request a family linkage application.
Members interested in family studies who have family members currently enrolled in the Registry should also complete the family linkage application. Once enrolled, families will get information about opportunities to participate in family studies and other studies promoted by the Registry.
As always, no member is required to participate in any study.
Last updated: April 21, 2010