Request for Information (RFI): Identification of Clinical Research Sites with Interest in Multi-Center Clinical Studies in Hemoglobinopathies

Notice Number: NOT-HL-09-113

Key Dates
Release Date: February 4, 2009
Response Date:  March 7, 2009

Issued by
National Heart, Lung, and Blood Institute (NHLBI) (

This request for information (RFI) seeks to identify investigators and institutions interested in participation in collaborative clinical research studies in hemoglobinopathies.  Identification and characterization of sites with access to appropriate populations and potential infrastructure will facilitate the NHLBI’s development of a multi-center clinical study platform for future clinical research activities. 

The National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH) has completed a Strategic Plan that guides the Institute’s research investments in the area 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.  In order to meet the goals of the Strategic Plan, several strategies outlined in the Plan will require implementation, including establishment and expansion of collaborative resources for clinical research, as well as, the refinement of the process of initiating and conducting clinical trials.   Successful conduct of studies in underserved populations, with relatively uncommon diseases, like hemoglobinopathies, will necessitate contributions from a variety of available and newly identified resources.  For example, the new NIH network of Clinical and Translational Research Award (CTSA) institutions offers great promise for investigators interested in conducting research in community settings, affording them access to an integrated and organized resource. 

Information is needed to determine the number and location of potential clinical sites which desire to participate in a coordinated, inclusive program of multi-center clinical research in the field of hemoglobinopathies. 

Information Requested:
We seek to identify sites for clinical research with existent or potential interest and capacity to participate in multi-center clinical trials in hemoglobinopathies, with an emphasis on sickle cell disease and thalassemia.  A site may be currently conducting or have an interest in conducting research in a single area (e.g. sickle cell disease) or multiple areas (more than one type of hemoglobinopathy), based on available subject availability and resources.

Please email your response to:

In your response please provide the following (and include the Notice number HL-09-113 in the subject line):

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


Erin Smith
Blood Diseases Branch
National Heart, Lung, and Blood Institute
National Institutes of Health
6701 Rockledge Dr. MSC 7950
Bethesda, MD 20892-7950
Phone: 301-435-0050
Fax: 301-480-1046

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