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National Cancer Institute

The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human Services (DHHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training. The National Cancer Act of 1971 broadened the scope and responsibilities of the NCI and created the National Cancer Program. Over the years, legislative amendments have maintained the NCI authorities and responsibilities and added new information dissemination mandates as well as a requirement to assess the incorporation of state-of-the-art cancer treatments into clinical practice.

The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients. Specifically, the Insitute:

  • Supports and coordinates research projects conducted by universities, hospitals, research foundations, and businesses throughout this country and abroad through research grants and cooperative agreements.
  • Conducts research in its own laboratories and clinics.
  • Supports education and training in fundamental sciences and clinical disciplines for participation in basic and clinical research programs and treatment programs relating to cancer through career awards, training grants, and fellowships.
  • Supports research projects in cancer control.
  • Supports a national network of cancer centers.
  • Collaborates with voluntary organizations and other national and foreign institutions engaged in cancer research and training activities.
  • Encourages and coordinates cancer research by industrial concerns where such concerns evidence a particular capability for programmatic research.
  • Collects and disseminates information on cancer.
  • Supports construction of laboratories, clinics, and related facilities necessary for cancer research through the award of construction grants.

Childhood cancer advocates can participate in the National Cancer Institute (NCI) and the National Institutes of Health (NIH) through programs and advisory groups that incorporate patient and consumer advocates in science and public policy decision making.

Consumer Advocates in Research and Related Activities (CARRA) Program

The CARRA Program was created to streamline NCI’s placement of patient advocates in its committees and programs. Over 200 advocates with demonstrated involvement in cancer-related activities were chosen to serve the first 3-year term of this program.

The goals of the CARRA program are to ensure opportunities for consumer advocates to work as lay representatives with the NCI to:

  • establish research priorities;
  • design and implement cancer programs; and
  • foster an organizational atmosphere that values the contributions and perspectives of consumer advocates.

Advocates have the opportunity to select their service preferences. They can work on science and communications, as general cancer advocates, as cancer specific advocates, on prevention, quality of life, clinical trials, treatment, or survivorship.

For more information, visit the CARRA web site.

Director’s Consumers Liaison Group (DCLG)

NCI worked in conjunction with the Director’s Consumer Liaison Group to develop this new program.

The Director’s Consumer Liaison Group (DCLG) was created to advise the NCI director. Fifteen patient advocates, many of whom are cancer survivors, serve as liaisons between the office of the NCI director and the cancer advocacy community. The DCLG makes recommendations on scientific issues, programs, and research priorities. The NCI director selects members from a pool of applicants.

For more information, visit the DCLG web site.

National Cancer Advisory Board (NCAB)

The NCAB meets at least 4 times a year and advises, consults with, and makes recommendations to the Secretary of the Department of Health and Human Services (HHS) and the director of NCI. Its focus is policy issues, grants, and cooperative agreements. NCAB also serves as part of a secondary review process for technical and scientific peer review. Members are appointed by the President and, in addition to public representatives, include leaders in public policy, law, health policy, and health and scientific disciplines.

For more information, visit the NCAB web site.

Board of Scientific Advisors (BSA)

The BSA offers scientific advice on scientific program policy, progress, and the future direction of the NCI’s extramural research programs. It also provides concept review of extramural program initiatives. Members, including patient advocates, are appointed by the NCI director, and meet quarterly, sometimes in conjunction with the NCAB.

For a complete list of NCI’s advisory boards and groups, visit the BSA web site.

NIH Director’s Council of Public Representatives (COPR)

COPR was created to provide advice and recommendations to the NIH director on matters related to medical research, NIH policies and programs, and public participation in agency activities. COPR offers a public forum for discussing such key NIH issues as priority setting, clinical trials and managed care, privacy and genetics, and health disparities among various populations.