Release Date:  July 16, 2001

NOTICE:  NOT-NS-02-002

National Institute of Neurological Disorders and Stroke

The National Institute for Neurological Disorders and Stroke (NINDS) is 
considering issuing a contract for a National Repository for the study of Human 
Genetic Disorders.  The institute is attempting to identify competent sources to 
receive, process, distribute, and track blood samples for the creation of cell 
lines and DNA and the accompanying data of participants in gene discovery 
research, while protecting participants confidentiality.


Genetic studies of neurological disorders are increasing in number and 
complexity.  Discovery of disease related genes requires a large number of 
samples, which is difficult to obtain for the typical investigator.  The 
National Institute of Neurological Diseases and Stroke (NINDS) at the National 
Institutes of Health (NIH) is interested in establishing a repository which will 
allow storage, maintenance, and quality control, and equitable, ethical 
distribution of DNA and other resources important to research into genetic 
factors in Neurological diseases.

Information Requested:

Information in the following areas will aid in the design of the solicitation 
for a repository facility.  We ask that interested organizations identify 
critical criteria to include in the solicitation and describe their capabilities 
to meet these criteria.  Information presented need not be limited to 
these areas.

1. Ability to receive blood or tissue samples from researchers across the nation.
2. An ability to insure that samples were collected under IRB approved protocols.
3. The ability to perform DNA and cell line preparation and storage, and to 
assure quality control.
4. A means of masking individual identities to insure confidentiality.
5. An ability to distribute samples.
6. Maintain a database of accompanying data for each sample.
7. A safe and effective method for distribution of samples.
8. Determination and cataloguing of charges to investigators requesting samples.
9. Development and maintenance of a website containing:
  a. general information regarding the submission and requesting of samples 
  including diagnostic checklists
  b. information regarding samples available, including diagnosis, number of 
  affected members in which generations total (pedigree)
  c. information regarding number of samples from that kindred, if such exists, 
  in the repository
  d. the number of times the sample has been shared, five papers published in 
  which samples have been used
  e. a list of researchers who have submitted samples to date.
10. Report to the NINDS Project and Contracting Officers on a regular basis 
regarding the above activities.
11. Develop responses to changes in needs of the repository as the field changes, 
according to the specifications of the Project and Contract Officer.

This Request for Information (RFI) is for information and planning purposes only 
and shall not be construed as a solicitation or as an obligation on the part of 
the Government.  The Government does not intend to award a contract on the basis 
of responses nor otherwise pay for the preparation of any information submitted 
or the Government’s use of such information.  Acknowledgment of receipt of 
responses will not be made, nor will respondents be notified of the Government’s 
evaluation of the information received.  However, should such a requirement 
materialize, no basis for claims against the Government shall arise as a result 
of a response to this request for information or the Government’s use of such 
information as either part of our evaluation process or in developing 
specifications for any subsequent requirement.  Responses will be held in a 
confidential manner.  Any proprietary information should be so marked.

All respondents are asked to indicate the type and size of your business or 
organization, e.g., Large Business, Small Business, Hubzone Small Business, 
Small Disadvantaged Business, Women-Owned Business, 8(a), Historically Black 
College or University/Minority Institution (HBCU/MI), educational institution, 
profit/non-profit hospital, or other non-profit organization.

Responses should be identified with RFI No. NS-01-006, and are due by August 13, 
2001.  Please submit three (3) copies of your response, with a maximum number of 
five pages, to Patricia Denney, Contracting Officer, Contracts Management Branch, 
National Institute of Neurological Disorders and Stroke, NIH, 6001 Executive 
Boulevard, Room 3282, Bethesda, MD 20892-9531 (For Fedex or courier, use:  
Rockville, MD  20852).  Email responses will also be accepted at

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