|
Amish Study of Major Affective Disorders
Two Tiers of Data Access
The NIGMS Human Genetic Cell Repository has distributed samples from Dr. Janice Egeland’s studies on bipolar disease in the Old Order Amish since 1982. Samples from approximately 250 subjects have been available with clinical data since the late 1980’s. In the last few years Dr. Egeland has collected samples from additional members of the family and submitted additional cell lines prepared by her colleague Dr. Ed Ginns. These cell lines and DNA are now available under limited conditions.
As with any genetic study of a small community or population, there are concerns that the privacy of the extended family might be compromised if the pedigree were openly available on the web catalog. Following discussions with Dr. Egeland and with the input from the NIGMS Scientific Advisory Committee, the Repository has developed a two tier scheme for access to the clinical and pedigree information for the Old Order Amish Major Affective Disorders Collection. The relationships of the different sub-pedigrees to one another will not be available in the NIGMS Catalog. These relationships, together with some additional clinical data, are available upon application to Coriell. An application should include a detailed description of the project for which the cell lines or DNA samples will be used, copies of related manuscripts from the requesting laboratory and a full justification for use of the data.
Tier I: Open access on the web catalog for the NIGMS Human Genetic Cell Repository
Tier II: Available only by application to the NIGMS-delegated review at Coriell Institute. Additional information about the proposed use of the data and certain restrictions on data publication are required
- A complete pedigree indicating the relationships of each of the sub-pedigrees.
- Additional clinical data including the DSM IV diagnostic code.
- Application Form for Tier II Data from Amish Major Affective Disorders Study
|