RESEARCH PRIORITIES SUMMIT
The St. Baldrick’s Foundation held its first Research Priorities Summit, attended by board members, senior staff and 16 distinguished pediatric oncology researchers, January 9-10, 2010 in New York. All volunteered their time to come together to discuss and make recommendations for funding the best possible research with dollars raised by St. Baldrick’s volunteers.
After two days of intense and lively discussions, four types of research were agreed upon as most important to making progress, and three focus areas were recommended for special attention.
The day after the summit, the St. Baldrick’s Foundation board voted to accept all recommendations. Here is a brief summary of the priorities identified.
TYPES OF FUNDING
1) Phase III Trials - Infrastructure Grants
The rapid progress in finding cures for childhood cancers over the last 40 years was possible because most children with cancer are treated on a clinical trial. On a Phase III trial, patients are getting either the best treatment known or a treatment that has been tested extensively and is hoped to offer a better outcome.
There is a significant cost to opening and maintaining clinical trials at each institution. Methods of more effectively supporting clinical trials were discussed and will be implemented over the coming year, to give more children access to clinical trials, their best hope for a cure.
2) Education of new pediatric oncology researchers
The foundation will continue to fund fellowships to train new doctors to specialize in pediatric cancer research, as well as scholar awards to keep new researchers focused on finding cures while they gain the experience needed to receive federal funding.
In addition, two new programs will be put in place. First, scholarships will be offered for those who need to pursue another advanced degree to further specialize in an area of research. Second, the foundation will offer a small stipend for St. Baldrick’s Summer Fellows to work in pediatric oncology labs for 7-8 weeks during the summer between their first and second years of medical school. Some will choose to pursue pediatric oncology as a specialty as a result of this work.
3) Translational Research
This type of research is often called “bench to bedside” – taking what is learned in the laboratory and translating it into direct benefits for patients. The St. Baldrick’s Foundation will continue to fund this type of work through research grants and as research being conducted by St. Baldrick’s Fellows or Scholars.
4) New Discovery Research
New discovery research includes finding the genetic causes of childhood cancers, studying the hereditary responses of individual patients to drugs used to treat cancer, and more. This type of research relies upon scientists having access to tissue samples and detailed data from patients (collected during clinical trials). The St. Baldrick’s Foundation will continue to fund this type of work through research grants and as research being conducted by St. Baldrick’s Fellows or Scholars.
Adolescents & Young Adults (AYA)
Without making a single new discovery, 30% more teens with cancer could be cured with one simple change: They need to be treated by pediatric oncologists. Because families, patients and often their doctors do not realize the profound difference this makes in survival rates, too many are treated by medical oncologists outside of pediatric cancer protocols. Economic factors also are sometimes to blame for teens not being referred to pediatric oncologists.
Progress in curing adolescents and young adults with childhood cancers is lagging far behind the progress made in treating younger children. As a result of the summit, the foundation will pay special attention to this important area.
Many patients who survive childhood cancer will die later of either relapsed disease or a medical problem directly caused by the therapies that cured them. Over 30% of survivors have a serious medical condition or disability as a direct result of their treatments.
The St. Baldrick’s Foundation has always funded research to address these issues, and will continue to do so. This research includes both prevention (reducing late effects by changing current therapies) and intervention (treating patients who already have late effects).
More research is needed on symptom management, quality of life issues, family coping skills, compliance with therapy, and other areas of supportive care for childhood cancer patients. Fortunately, there is a growing number of nurses who are focused on this research and are pursuing or hold Ph.D.’s. This spring the St. Baldrick’s Foundation has added a new funding category for supportive care research.