MD Anderson and the Rare Cancer Research Foundation launch collaboration to accelerate the development of treatments for rare cancers

MD Anderson News Release September 30, 2021

The University of Texas MD Anderson Cancer Center and the Rare Cancer Research Foundation today announced the launch of a collaboration designed to accelerate the development of new treatments for rare cancers by empowering all patients in the United States to contribute tumor samples directly to MD Anderson for translational research efforts.

This initiative is designed to overcome a major obstacle that has long prevented significant progress in rare cancer research — the lack of available samples. The Rare Cancer Research Foundation will use its Pattern.org online engagement platform to enable patients to donate tumor biopsies and surgical samples for research purposes.

With these samples, MD Anderson researchers will perform comprehensive analyses and will work to develop laboratory models that can be used to pursue new therapeutic strategies for rare cancers. New discoveries then can be used to design and launch clinical trials to evaluate these strategies for patients in need.

“The development of new rare cancer treatments is often stymied not by hard scientific questions but rather by the lack of patient models and datasets necessary to conduct research,” explained Mark Laabs, founder and chairman of the Rare Cancer Research Foundation. “We are delighted that this collaboration will empower patients nationwide to contribute their samples and medical information to cutting-edge work at MD Anderson and to accelerate the development of new treatments for rare cancers.”

Rare cancers are defined as those with fewer than 40,000 new cases diagnosed annually in the U.S. Taken together, rare cancers represent roughly 25% of all cancer cases and are the leading cause of cancer-related deaths. The Rare Cancer Research Foundation is committed to advancing research for these cancer types through strategic investments and innovative collaborations. MD Anderson is a world leader in the diagnosis and treatment of these cancers; more than 5,000 patients with the rarest diagnoses seek treatment at the institution each year.

“Our collaboration with the Rare Cancer Research Foundation allows rare cancer patients having surgery anywhere in the U.S. to join in the research effort by contributing excess tumor tissue, giving them the opportunity to truly make an impact on the entire community of these patients,” said Andy Futreal, Ph.D., chair of Genomic Medicine at MD Anderson. “Each piece of data or model generated is a potentially transformative tool that can advance our understanding and bring us closer to effective new therapies.”

MD Anderson established its Rare Tumor Initiative in 2019 to comprehensively characterize rare tumors throughout the course of each patients’ care. In 2021, the institution launched a translational research platform with the Broad Institute of MIT and Harvard, designed to create a catalog of rare cancer models and to provide a data resource for researchers in the field. The current collaboration will integrate with these efforts to further accelerate the pace of research and generate much-needed therapeutic insights.

Research efforts at MD Anderson will be led by Futreal and Timothy Heffernan, Ph.D., executive director of Translational Research to AdvanCe Therapeutics and Innovation in ONcology (TRACTION) platform. The work will focus on comprehensive molecular and functional characterization of donated tumor samples, with the potential to generate laboratory cell lines to enable further study. The initiative aims to fully characterize more than 60 rare cancer samples and develop 20 laboratory models. These data and models will be made available to the research community, allowing scientists worldwide to contribute breakthroughs to the field.