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Summaries of Meetings
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Working Group on Cardiomyopathies in Children with Rare Diseases National Heart, Lung, and Blood Advisory Council's June Meeting |
The NHLBI convened a working group to advise it and the NIH Office of Rare Diseases on research needed to understand the cause of cardiomyopathies in children with rare diseases and to improve care for them.
Hypertrophic cardiomyopathy is a genetic disorder characterized by left ventricular hypertrophy. The outlook for children with cardiomyopathy is bleak. Almost 40 percent of them die or require a heart transplant, and so far medical research has not significantly altered their prognosis.
The working group discussions focused on gaps in knowledge, the inability to screen and diagnose cardiomyopathies in children, and the inability to provide adequate treatment. Recommendations were to convene a group to define standards of care, establish a task force to identify research priorities and scientific opportunities, develop new technologies and screening methods to find cardiac gene mutations related to pediatric cardiomyopathies, develop new animal models, determine the mechanisms involved in viral myocardial disease, establish an on-line health information system, initiate a clinical treatment trial of ACE inhibitors in Duchenne muscular dystrophy patients asymptomatic for cardiac dysfunction, and stimulate research on enzyme replacement therapy.
The full executive summary is available online.
Dr. Nabel informed the Council of her plans to write a series of journal editorials addressing timely topics of interest to the research community. Her first, entitled "A Vision for the Future: Opportunities and Challenges," was published this summer in The American Journal of Respiratory and Critical Care Medicine, Blood, Circulation, and Sleep.
Dr. Nabel announced the initiation of We Can! (see related article). It provides resources and community-based programs for parents, caregivers, and youth to encourage healthy eating, increase physical activity, and reduce sedentary time. More than 35 communities have already agreed to implement We Can! programs, and the NHLBI will be seeking more partners in a variety of community settings to use and distribute program materials.
Dr. Nabel noted the austere financial times currently faced by the NIH. The proposed FY 2006 President’s Budget for the NHLBI is $2,951.3 million, a 0.3 percent increase over the Institute's FY 2005 appropriation.
Dr. Nabel initiated discussion about the possibility of establishing NHLBI Centers of Excellence in heart, lung, blood, and sleep disorders. As background, Dr. James Kiley reviewed the Institute's approach to clinical research. Council members were supportive of the Centers concept.
Dr. Helena Mishoe discussed current NHLBI practices to foster independence of new investigators, as well as potential future strategies. Dr. Nabel emphasized that the Institute is looking at both short- and long-term approaches to helping new investigators, as well as contributing to NIH-wide
approaches.
Thirteen new initiatives that had been reviewed by the Board of Extramural Advisors in April were presented to the Council, which supported all of them.
During the closed portion of the meeting, the Council concurred on the award of 315 grants for a total cost of $176,195,000.
The next Council meeting is scheduled for 8:30 a.m. on September 16, 2005. It is open to the public and will be held in NIH Building 31C, Conference Room 10.
Full minutes of Council meetings and summaries of the initiatives are available.
PIO representatives will be accommodated on a space-available basis and will be responsible for their own travel expenses.
Location: Bethesda, Maryland
Date: September 12-13, 2005
Contact: Dr. Susan Banks-Schlegel
Location: Bethesda, Maryland
Date: September 14, 2005
Contact: Dr. David Lathrop
Location: Bethesda, Maryland
Date: September 19, 2005
Contact: Dr. Suzanne Goldberg
Location: Bethesda, Maryland
Date: September 20, 2005
Contact: Dr. Greg Evans
Location: Bethesda, Maryland
Date: September 21, 2005
Contact: Dr. Stephen Goldman
Location: Bethesda, Maryland
Dates: September 26-27
Contact: Dr. Cristina Rabadan
Location: Bethesda, Maryland
Date: September 2005
Contact: Dr. James Kiley
Location: Bethesda, Maryland
Date: October 6-7, 2005
Contact: Dr. Elizabeth Denholm
Location: Bethesda, Maryland
Dates: December 5-6, 2005
Contact: Dr. Eser Tolunay
Location: Bethesda, Maryland
Dates: March 2006
Contact: Dr. Thomas Croxton
Dates: September 28 - October 2
Location: San Francisco, CA
Dates: September 30 - October 1
Location: Bethesda, MD
Date: October 1
Location: Portland, OR
Date: October 8
Location: Palo Alto, CA
Date: October 15
Location: Orlando, FL
Dates: October 17-19
Location: Washington, DC
Dates: October 20-23
Location: Milwaukee, WI
Date: October 22
Location: Manhattan Beach, CA
Date: October 26
Location: Building 31C, Conference Room 10, NIH Campus, Bethesda,
MD
Time: 8:30 a.m. - 1:30 p.m. Meetings are open to the public.
Dates: October 27-29
Location: San Diego, CA
Dates: October 29- November 3
Location: Montreal, Quebec
Dates: October 31- November 2
Location: Las Vegas, NV
Dates: November 5-9
Location: New Orleans, LA
Dates: November 11-12
Location: Orlando, FL
Dates: November 13-16
Location: Dallas, TX
Dates: December 3-6
Location: New Orleans, LA