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Children’s Brain Tumor Foundation Announces Novel Tissue Bank Consortium to Speed Treatment and Cures for Pediatric Brain Tumors and Cancer

Tuesday, July 1, 2008

Initiative will add value to research process by promoting collaboration, common standards

Pediatric brain and spinal cord tumors are oftentimes called the toughest children’s cancer. Nearly one in three children diagnosed will not survive for five years. Survival comes at a price due to the neurological damage posed by the cure of surgery, chemotherapy and radiation. And research is daunting.

Research is particularly challenging due to the absence of collaboration and standardization among hospital-based tissue banks across America, as well as the multiplicity of tumor types. Tissue banks are just what they sound like, repositories of tissue samples that can be characterized, analyzed and used to evaluate treatments. Breast cancer, prostate cancer and melanoma have all, in recent years, seen dramatic improvements in treatment because of tissue banks and the ability they provide to analyze large volumes of tissue samples.

Unfortunately for kids suffering from pediatric brain and spinal cord tumors, tissue banking of tumor samples is like a small pie cut into too many pieces. Many hospitals have tissue banks, but few if any have sufficient volume of different kinds of tumors to conduct comprehensive research. None has sufficient quantities of all tumor types. Without this, meaningful analysis that might lead to treatment and cures is virtually impossible.

The Children’s Brain Tumor Foundation (CBTF), established in 1988 with a mission to improve the treatment, quality of life and long-term outlook for children with brain and spinal cord tumors, has proposed a novel solution. Rather than creating another tissue bank, the organization, unaffiliated with any specific hospital, has proposed creating a multi-institution research program in which participating hospitals agree to collect and organize tissue samples and share data with all participants. A standardized database will be used to collect and centrally record clinical data. Participating institutions will be selected for their established track record of high-quality and quantity tissue acquisition, willingness to prioritize specimens for cooperative use, an existing data management infrastructure, and the strength of the institutional personnel to conduct research using the cooperative data.

According to Susan L. Weiner, PhD, Chair of CBTF’s Grants Committee, “This approach has been long needed, and we felt it was time to step up and try to leverage our position as a “fair broker” with an exclusive and consistent interest in treating and curing kids suffering from this horrible disease. Our only motivation is to speed scientific progress for the sake of the families and kids we all serve.”

CBTF has already won the commitment of its principal organizational contributor, the Licensing Industry Merchandisers’ Association (LIMA), to back this effort. Say Cheryl Stoebenau, Co-Chair of LIMA’s Charity Committee, “LIMA members’ products bring joy to countless children’s lives, so we are excited by the opportunity to be part of a scientific venture that can extend that joy to kids suffering from brain and spinal cord tumors. We believe our commitment will make a real difference to the success of this undertaking and are proud to support the efforts of the Children’s Brain Tumor Foundation.”

The Foundation has already secured the commitment of three leading institutions to participate in this effort; Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh and Children’s Memorial Hospital in Chicago. It is anticipated more institutions will be added. Leading the initiative for the Foundation is Dr. Tom Curran from the University of Pennsylvania. Dr. Ian Pollack, who will participate in the consortium from Children’s Hospital of Pittsburgh, observes, “Dr. Curran is not only a nationally recognized expert in the molecular biology of pediatric tumors, he is also widely respected as a collaborator and a leader in the field. He is a wonderful choice to spearhead this effort.”

The project is currently underway with resources provided by CBTF. At the same time the Foundation is seeking co-funding support from foundations and organizations interested in a first-ever, national, cooperative research effort to eradicate this devastating disease.

For more information please contact Joe Fay, Executive Director, Children’s Brain Tumor Foundation at or 212-448-9494.



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