SOLICITATION NOTICE
A -- National Research Roster for Huntington Disease and Families
- Notice Date
- 7/1/2009
- Notice Type
- Presolicitation
- NAICS
- 541712
— Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology)
- Contracting Office
- Department of Health and Human Services, National Institutes of Health, National Institute of Neurological Disorders and Stroke, 6001 Executive Boulevard, Neuroscience Center, Suite 3287, MSC 9531, Bethesda, Maryland, 20892-9531
- ZIP Code
- 20892-9531
- Solicitation Number
- NIH-NINDS-09-02
- Archive Date
- 8/30/2009
- Point of Contact
- Helene C Braun, Phone: 301 496-1813
- E-Mail Address
-
hb106s@nih.gov
(hb106s@nih.gov)
- Small Business Set-Aside
- N/A
- Description
- The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), intends to award a two-year extension, with additional funds, to its current contract with the Indiana University for the continued maintenance and phase-out of the "National Research Roster of patients and families affected by Huntington Disease." The two-year extension will allow Indiana University sufficient time to transition the roster, its data base and all information to another source that will take on roster accessibility and maintenance support outside of a NINDS contract. 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 time-extension will allow for the consent and permission process to occur smoothly. It is anticipated that the current contract will be extended from September 30, 2009 through September 29, 2011. The Indiana University has, since 1979, developed, maintained and expanded the National Roster for Huntington Disease Patients and Families which consists of 2,400 families and 136,228 individuals affected by HD 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, to recruit for ongoing clinical trials, and to provide statistical and demographic data on Huntington's Disease. The present contractor has approximately 30 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 NINDS considers Indiana University to be the only source that could possibly continue this work by virtue of their extensive experience under the contract to date, their intimate involvement with and consent issues surrounding the patients and families participating in the roster. 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. 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.
- Web Link
-
FBO.gov Permalink
(https://www.fbo.gov/spg/HHS/NIH/NINDS/NIH-NINDS-09-02/listing.html)
- Place of Performance
- Address: Indiana University, 620 Union Drive, Room 618, Indianapolis, Indiana, 46202-5167, United States
- Zip Code: 46202-5167
- Zip Code: 46202-5167
- Record
- SN01863894-W 20090703/090702003702-d9245ac2844cfcceda207b57e673779e (fbodaily.com)
- Source
-
FedBizOpps Link to This Notice
(may not be valid after Archive Date)
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