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Freedom of Information Act Office

IC Directors' Meeting Highlights

April 11, 2005

To: IC Directors
From: Director, Executive Secretariat
Subject: IC Directors Meeting Highlights—February 24, 2005

Discussion Items

I. Roadmap Update – Clinical Research Networks and Inventory Initiative

Dr. Kleinman announced that today’s Roadmap presentation would be the first of several for the IC Directors. Drs. Kiley and Friedman of NHLBI reported on the Clinical Research Networks and Inventory component of the Re-engineering the Clinical Research Enterprise Roadmap. This component is twofold:

  • The 18-month inventory now under way will develop a full inventory and database of existing clinical research networks and evaluate existing informatics and training infrastructures to identify characteristics that promote or inhibit successful network interactivity, productivity and expansion, or broadening of research scope. Findings and "best practices" will be disseminated, in part by a national leadership forum tentatively scheduled for February of 2006.

  • The 12 three-year feasibility projects, selected through a Broad Agency Announcement, are aimed at enhancing the clinical research infrastructure through increasing the scope of research activities, increasing participation, and facilitating communication and cooperation among networks.

The results of the inventory and the feasibility studies will assist in the development of a National Electronics Clinical Trials and Research (NECTAR) network. NECTAR will provide the informatics infrastructure that will serve as the backbone for interconnected and interoperable research networks.

Dr. Kiley summarized the first year of this effort noting that 1) the inventory project has established a definition for a Clinical Research Network, sources of information, and methodology; and 2) the feasibility of integration aspect will focus on informatics, interoperability, and expansion and address a range of medical disciplines, ages, information systems, and geographic locations.

During the discussion that followed, Dr. Katz remarked on the popularity of the RFAs for the feasibility studies and congratulated and praised Dr. Friedman, who is retiring, for his efforts. Dr. Gallin suggested that the NIH intramural program be considered under the inventory aspect of the effort. Dr. Vaitukaitis asked that the inventory effort also include an “ideal system” as well as best practices in its findings.

II. Proposed Office of Portfolio Analysis and Strategic Initiatives

Dr. Kington announced that the driving idea behind this proposed office is the need for tools to help the NIH better manage its research portfolio and that it would be discussed at the upcoming Executive Retreat. Dr. Katz mentioned the current lack of centralized NIH information on the issues of the burden of illness and priority setting, and Dr. Collins suggested that the proposed office could offer a repository for such information and also be a convener of trans-NIH decision makers. Dr. Zerhouni described the potential office as a coordinator rather like a conductor whose mission is to synchronize an orchestra and elicit the best from individual members.

Scientific Presentation

Dr. Collins reported on the exciting progress of the NHGRI-led International HapMap Project (www.hapmap.org) begun in 2003. The goal of this effort, to which 16 ICs in addition to NHGRI have provided support, is to develop a haplotype map of 80 to 90 percent of the human genome so as to locate genes and variants that contribute to a number of common conditions such as Alzheimer’s disease, cancer, schizophrenia, diabetes, stroke, osteoporosis, heart disease, autism, and asthma. The collaboration, involving Canada, China, Nigeria, Japan, the U.K., and the U.S., completed its phase one map, comprising over one million SNPs genotyped, and will provide its final HapMap analysis in February 2005. Dr. Collins noted that the collaboration has dramatically lowered the cost for carrying out association studies, and the project is bringing us to the cusp of exciting discoveries on the genetics of common diseases. He gave examples related to diabetes and Crohn’s disease. Offering to speak at IC Councils on the project, he again thanked the contributing ICs for their support. The group welcomed the update enthusiastically.

Dale Johnson
cc: OD Senior Staff

This page last reviewed on July 8, 2011

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