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Title: Request for Information (RFI): Defining a Research Agenda for Sickle Cell Disease and Other Hemoglobinopathies

Notice Number: NOT-HL-08-108

Response Date: January 14, 2008


This request for information (RFI) seeks comments on the current and evolving scientific opportunities for investment in research that will lead to improved understanding of sickle cell disease (SCD) and other hemoglobinopathies and enable improved methods of treatment for the major clinical problems of those affected with the diseases.


The National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH) has recently completed a Strategic Plan that will guide the Instituteís research investments in the areas of heart, lung, and blood diseases. The Institute is now examining how it will address the goals defined in the Strategic Plan across its broad research portfolio. The mission of the NIH is to conduct and support research and research training. The NHLBI is uniquely positioned to catalyze changes that transform new scientific knowledge into measures that can improve the public health, and to communicate advances in knowledge to the individuals and institutions directly engaged in disease prevention and healthcare delivery. Research in the field of sickle cell disease is supported by multiple Institutes at the NIH. The NHLBI supports basic and clinical research in SCD and other hemoglobinopathies. Over the past decade, several therapies (e.g., hydroxyurea, chronic transfusion, and hematopoietic stem cell transplantation) have been developed that are known to be effective in mitigating various complications of SCD. Many of them have implications for other hemoglobinopathies as well. Earlier studies supported by the NHLBI demonstrated the efficacy of prophylactic antibiotics for prevention of early death in affected children. The results of those studies led to widespread neonatal screening and greatly increased lifespans for people born with SCD. We now seek input from the scientific community in the major scientific opportunities in basic and clinical research for SCD, which we aligned with the NHLBI Strategic Plan .

Information Requested

Please respond by identifying what you consider to be the major scientific opportunities for advancing understanding of SCD and other hemoglobinopathies, and providing suggested approaches to best exploit them. This RFI is for planning purposes only and should not be construed as a solicitation for applications or as an obligation on the part of the Government to provide support for any ideas identified in response to it. Please note that the United States Government will not pay for the preparation of any information submitted or for its use of that information. Responses will be compiled and shared internally and with the National Heart, Lung, and Blood Advisory Council, with one or more subcommittees of the Council, and with scientific working groups convened by the NHLBI, as appropriate. In all cases where responses are shared, the names of the respondents will be withheld. We look forward to your input and hope that you will share this document with your colleagues. Thank you very much for your help.


The response period has ended as of January 15, 2008. Responses are no longer being accepted and the e-mail inbox and comments page are no longer available to receive responses.

To respond, please link to the online form at: Comments Page (note: this link opens a new window; to return, simply close that window). Please make sure you disable pop-up blockers. (Non-JavaScript link to the Comments Page.) Or send a letter, fax, or email to:

Request for Information
Defining a Research Agenda for Sickle Cell Disease
and Other Hemoglobinopathies
National Heart, Lung, and Blood Institute
Building 31, Room 5A48
9000 Rockville Pike
Bethesda, MD 20892- 2486

Fax: (301) 480-1124
Email: NHLBI_SickleCell@mail.nih.gov

On your response please provide the following (and include the Notice number HL-08-108 in the subject line):

  1. Describe the scientific opportunities that are likely to have the greatest effect upon the understanding of the biology of SCD and other hemoglobinopathies in the next 5 to 10 years. In particular, please identify the most important basic biologic questions that must be resolved to enable development of new diagnostic and therapeutic targets.
  2. Describe the most important scientific opportunities for clinical research on SCD and other hemoglobinopathies.
  3. Identify your relationship to research on SCD and other hemoglobinopathies (i.e., are you a patient, a family member or close friend of a patient, a member of an advocacy or community group, a basic researcher, a clinical researcher, a health-care provider?).
  4. I heard about the Request for Information on Sickle Cell Disease and Other Hemoglobinopathies from:
    ___ The NIH Guide to Grants and Contracts __ The NIH Public Website __ Other. Please provide details.


Susan B. Shurin, M.D.
Deputy Director
National Heart, Lung, and Blood Institute
Building 31, Room 5A48
9000 Rockville Pike
Bethesda, MD 20892- 2486
Telephone: (301) 496-1078
Fax: (301) 402-0818
Email: Shurinsb@nhlbi.nih.gov

Last update: January 15, 2007

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