Freedom of Information Act Office
IC Directors' Meeting Highlights
May 29, 2012
|Subject:||IC Directors' Meeting Highlights — March 8, 2012|
Announcements: Dr. Collins provided brief summaries of the House and Senate LHHS Appropriations Subcommittee hearings with Secretary Sebelius and noted upcoming House and Senate Hearings for NIH later in March. He also noted the upcoming departure of Dora Hughes, who will be stepping down as Counselor to the Secretary in April.
Undiagnosed Diseases Program: Eric Green, Bill Gahl, and Larry Tabak
Dr. Green briefly described the history of the Undiagnosed Diseases Program (UDP). Dr. Gahl then provided an overview of the program's goals and illustrated the types of cases that come to the UDP through the Clinical Center, focusing on a few examples of novel diagnoses and potential therapies for UDP patients. Half of the referrals and accepted patients are neurology patients. Following an initial scale up, Dr. Green noted that the UDP was funded at $3.5M per year in FY10-12 as a pilot, with plans to then reevaluate the program going forward in FY13 and beyond.
Dr. Tabak provided some options for funding support of the UDP in FY13 and beyond. IC Directors agreed that the UDP is an important program and needs to be supported going forward. The best model for how to support the UDP in the future needs further careful deliberation. There was resonance for exploring a new Common Fund initiative because of the emerging opportunity to create a bold new way of training health care providers in the use of genomics to inform diagnosis and potential interventions.
H5N1 Update: Tony Fauci
Dr. Fauci provided an update on the recent activities regarding two H5N1 influenza research manuscripts. The National Science Advisory Board for Biosecurity (NSABB) recommended that the full manuscripts not be published. In light of clarifications regarding the data, the authors of the original manuscripts have been asked to revise and resubmit their manuscripts to the NSABB for re-examination.