Specialized Programs of Research Excellence in Brain Tumors and Patient Advocates
Specialized Programs of Research Excellence (SPOREs) are funded by the National Cancer Institute (NCI) through a specialized center grant (P50). The research supported is interdisciplinary, and the purpose is to move basic research findings from the laboratory into the clinic, and clinical observations to the laboratory. The populations served are "cancer patients and populations at risk of cancer." Through the collaborative research of laboratory and clinical scientists, novel ideas are brought from "hypothesis to clinic."
The environment for these discoveries are "clinical care settings that have the potential to reduce cancer incidence and mortality as well as improve survival and the quality of life," according to the NCI. The Institute requires that SPORE investigators work collaboratively to plan, design and implement research for "cancer prevention, detection, diagnosis and treatment." SPOREs approach these goals through collaborative efforts within individual multidisciplinary teams, inter-SPORE collaborations, partnerships with other NCI/NIH programs, and public-private partnerships with industry and non-profit organizations.
A key component of the program is the need for patient advocates to work with scientists to represent the patient's perspective, their needs and care, throughout the clinical trial.
The Patient Advocacy Research Team (PART) program helps SPOREs build effective collaborations with cancer patient advocates, who make a personal commitment to work directly with researchers in a specific SPORE program. In addition, patient advocates get involved operationally with SPORE research so that each SPORE realizes its translational goals more efficiently and so patients get better and faster answers. These patient-focused individuals may also belong to other patient advocacy organizations but concentrate on helping SPOREs move toward patient-oriented results.
There are currently brain tumor SPOREs at four institutions: University of California San Francisco, University of Alabama at Birmingham, Duke University Medical Center and the Mayo clinic. The PART representative to the brain tumor SPOREs is Dianne Traynor of the Pediatric Brain Tumor Foundation. The translational research undertaken by these SPOREs focuses on adult tumors, but SPORE researchers are very much aware of the need to include pediatric patients in their research and it is anticipated that translational research results for adult brain tumors may be applicable to childhood tumors. Serving as a patient advocate to these groups helps insure that pediatric brian tumors are also being represented.
