Request for Information: Soliciting Input on Current Approaches to Developing Integrated Databases to Advance Research in Parkinson’s Disease

Notice Number: NOT-NS-09-010

Update: The following update relating to this announcement has been issued:

Key Dates
Release Date: April 21, 2009  
Response Due By: New Date June 26, 2009 per NOT-NS-09-013; Original Date: May 22, 2009

Issued by
National Institute of Neurological Disorders and Stroke (NINDS) http://www.ninds.nih.gov

Purpose

This is a time-sensitive Request for Information (RFI) issued by the National Institute of Neurological Disorders and Stroke.  The information requested is meant to ascertain the needs for clinical databases and linked biorepositories to advance clinical and translational research in Parkinson’s disease. The Institute envisions such an effort as serving the data sharing and data integration needs of the wider research community including industry, non-profit Parkinson’s disease-related organizations, and the research activities of other NIH Institutes and Federal agencies including the Veterans Administration and the Department of Defense.  The responses to the RFI will be collected by various Institute staff to assess how best to meet the needs of researchers in the field and will be made available to the public.

Background

NINDS is committed to facilitating the collection and sharing of data and biologic samples amongst clinical and translational researchers in Parkinson’s disease.  Given the advances in technology and the increasing types and amounts of data being collected, we are interested in implementing efficient methods of data sharing.  Additionally, as the efforts to develop valid biomarkers for the risk and progression of Parkinson’s disease expand, we want to ensure access to biospecimens that might facilitate major research advances. 

This RFI is meant to solicit input from the greater extramural research community, scientific and medical organizations, Federal Agencies, and other interested parties well-versed in establishing and managing large databases and repositories.  It is meant to solicit input from the greater research community in Parkinson’s disease about how specific databases linked to biorepositories could advance the effort to discover better strategies to treat and/or prevent Parkinson’s disease.  Responses to this RFI will be reviewed by NINDS staff and will help inform and complement their assessment of the field and the identification of specific, achievable goals that have the potential to advance and transform the field overall. This RFI is for planning purposes only, and should not be construed as a solicitation for applications or proposals and/or as an obligation in any way on the part of the United States Federal Government. 

Information Requested

The mission of NIH is to support biomedical discoveries that will improve health and save lives. The NIH is committed to data sharing and seeks input about the optimal approaches to establishing and managing large databases and biospecimen repositories.  NINDS would like input on the following issues:

Large databases:

  1. Describe what key features would enhance the value and utility of a large clinical database for use by clinical and translational researchers.
  2. Describe how clinical, imaging, biologic/genetic, and pathology data can be linked most effectively.
  3. Identify what considerations impact the cost effectiveness of data collection and data sharing.  
  4. Identify what are the most important barriers that must be overcome to enhance data sharing procedures and how could these barriers be overcome.
  5. Identify what technologies can enhance the functional utility of a large clinical database.

Repository for biospecimens:

  1. Describe the advantages of a federated versus non-federated repository. 
  2. Describe how the collection of various biosamples in Parkinson’s disease should be organized to optimize utility.

General Information:

  1. Please identify the nature of your interest in the area of databases and repositories (i.e. are you a biomedical or clinical researcher, a member of an advocacy or community group, or other?).
  2. If you are a member of a particular advocacy or professional organization, please indicate the name of the organization.
  3. If you or your organization is involved in Parkinson’s disease clinical research, please indicate what features of a large integrated database would be useful to your group or organization.  Describe what conditions would need to be met for you or your organization to enter data in such a database.
  4. Within research, please indicate your main area of interest.

Responses

Responses must be submitted electronically using the web-based form at http://www.ninds.nih.gov/research/clinical_research/rfi.htm, and will be accepted through May 22, 2009.  Replies to individual questions are optional, and the site will permit anonymous responses.  The information provided will be analyzed and may appear in various reports. 

Inquiries

Specific questions about this RFI should be directed to the contact listed below:

Wendy R. Galpern, M.D., Ph.D. 
Program Director, Office of Clinical Research
NINDS / NIH
6001 Executive Blvd., Rm 2225
Bethesda, MD 20892
Phone:  301-496-9135
Fax:  301-480-1080
E-mail:  galpernw@ninds.nih.gov


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