Contract Management Branch, National Institute of Neurological Disorders and Stroke, NIH, Federal Building, Room 901, 7550 Wisconsin Avenue, MSC 9190, Bethesda, Maryland 20892-9190

A -- NATIONAL RESEARCH ROSTER FOR HUNTINGTON DISEASE PATIENTS AND FAMILIES POC Kirkland L. Davis, Contracting Officer, (301) 496-9203 The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), contemplates sole-source negotiations with Indiana University for the continued maintenance and expansion of the "National Research Roster for Huntington Disease. " A new five year contract, beginning July 1998 is contemplated. The Indiana University has since 1979, developed, maintained and expanded the National Roster for Huntington Disease Patients and Families for the NINDS. This roster has had a substantial impact in stimulating and supporting research on Huntington's Disease. The roster is used to contact potential participants in research studies, to locate individuals of particular research interest, and to provide statistical and demographic data on Huntington's Disease. The present contractor has approximately 20 years experience collecting information from Huntington's Disease patients, and has established an extensive and intimate relationship with the participating patients and their family members. The contractor also has extensive experience with the participants associated with the data collection, coding, storage and retrieval methods. The contractor has the capability to establish genealogy, access patients, and to maintain a roster which provides statistical and demographic data on Huntington's Disease. The NINDS considers Indiana University the only source to continue this work by virtue of their intimate involvement with the patients and families participating in the roster, the sensitive nature of the records, their prerequisite knowledge, skilled personnel, experience, and facilities as demonstrated by their past and current work under this contract project. Indiana University is considered the only responsible source to continue this work pursuant to 41 U.S.C. 253 (c)(1) as set forth in FAR 6.302-1. Patient and family confidentiality issues preclude the transfer of roster information to another source without the written consent and permission of the current roster participants.The duplication of cost and effort, and time delays that would be encountered for another organization to re-establish this roster at its current operational level, are unacceptable to the Government. This is not a formal solicitation nor an announcement that a RFP is available. See numbered Notes 22 and 26. (0014)

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