On April 4, 2014 the Alliance for Childhood Cancer convened an issue briefing for congressional staff on “Pediatric Cancer Registries: A Cornerstone of Cancer Care & Research.” Speakers included Elizabeth Wells, MD, of the Department of Neurology and The Brain Tumor Institute at Children’s National Medical Center; and Jennifer Cullen, PhD, MPH, Director of Epidemiologic Research at the Department of Defense Center of Excellence’s Center for Prostate Disease Research.
In her presentation, Dr. Wells stressed the value of using outcomes research to determine potentially effective therapies, and noted that cancer registries “provide appropriate methodology for outcomes research.” She also pointed out that studies based on outcome analysis “have really changed the way we do research,” and offered a list of six specific benefits that registries offer, including:
- Promoting research that is not achievable through single institutions or consortium-based studies that are currently underway;
- Providing a resource for the scientific community including clinical and translational researchers;
- Expanding the understanding of clinical and treatment factors predisposing to cancer-related morbidity and mortality;
- Impacting care delivery and investigations for current and future cancer patients;
- Promoting cancer survivor health, well-being and appropriate health utilization review; and
- Spurring future research into novel agents and techniques to maximize survival, spare acute toxicity, and late effects
Dr. Cullen’s presentation included a description of her daughter’s diagnosis, struggle, and ultimate loss to medulloblastoma over a period of 13 months in 2011-2012. She noted that registries allow for “agnostic research” that holds promise, and referred to the registry for adult cancers at Walter Reed National Military Medical Center as a “national treasure” which should be replicated for childhood cancer research.
Dr. Cullen also pointed to the Lifetime Cohort Study – one of several large-scale cohort studies created by St. Jude Children’s Research Hospital to characterize the occurrence and risk profiles for long-term late effects of therapy – as a beneficial program for childhood cancer research.
HR 2607/S 1251 – the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act – was also brought up during the briefing. This bipartisan bill has been introduced in both chambers of Congress, and includes funding that will help improve the tracking of childhood cancer cases by state cancer registries, and will expand childhood cancer research by establishing new biorepositories.
Passage of the bill, which is broadly supported by advocates in the cancer community, would also result in a General Accountability Office study to investigate barriers to developing new drugs for kids with cancer. Reps. Mike McCaul (R-TX) and Chris Van Hollen (D-MD) are the primary sponsors of HR 2607 in the U.S. House of Representatives and Senators Jack Reed (D-RI) and Deb Fischer (R-NE) are the primary sponsors of S 1251 in the U.S. Senate.
Founded in 2001, the Alliance for Childhood Cancer is a forum of 29 national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington, D.C., to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer.