Rare Cancer Research Foundation and UNC Lineberger Announce Sarcoma Registry Partnership
July 27, 2026
FOR IMMEDIATE RELEASE
Rare Cancer Research Foundation and UNC Lineberger Announce Sarcoma Registry Partnership, Advancing Research Into Rare Cancers
DURHAM, NORTH CAROLINA — The Rare Cancer Research Foundation (RCRF) announced a new partnership with the UNC Lineberger Comprehensive Cancer Center at the University of North Carolina at Chapel Hill to support sarcoma patients in donating tissue and health data for research. The partnership will fund an on-site research assistant at UNC Health dedicated to helping patients understand the value of donation and, when appropriate, enroll in research registries that capture this information for scientists to study.
Sarcomas are a group of rare and highly diverse cancers that affect the body's connective tissues, such as bone, muscle, and fat. Soft tissue sarcomas make up less than 1% of all adult cancers, with roughly 13,000 to 14,000 new cases diagnosed in the United States each year; when bone sarcomas are included, that number rises to about 15,000. Making research even harder, sarcomas are split into more than 70 distinct subtypes, meaning any single hospital typically sees only a small number of patients with a given subtype. This scarcity has long made it difficult for researchers to gather enough data to understand why these cancers behave the way they do, why and how they develop resistance to treatment, and how new therapies might help.
To help address this, the new research assistant role will work directly with UNC Health’s sarcoma patients to explain how donating excess tissue and clinical information after treatment can support research, with no additional burden or cost to patients. The research assistant will help enroll interested, eligible patients into both UNC Lineberger's own sarcoma registry and RCRF's national Pattern.org registry, maintaining audit-ready compliance with applicable IRB approvals, data use agreements, and institutional privacy and security requirements. RCRF makes this data publicly available to any qualified researcher, independent of any single institution, widening access to a larger, more diverse research pool and accelerating discoveries that hold true across patient populations.
Over the next two years, the partnership aims to enroll at least 300 sarcoma patients into these combined registries and collect fresh tissue samples from at least 100 of them. Beyond growing the number of samples available for research, the partnership will also build a detailed picture of UNC Health's sarcoma patient population, including cancer subtype, stage, and background, as well as treatments received, how patients responded, and genetic testing results. Together, this information will help researchers better understand patient subgroups and design future studies targeted at specific sarcoma subtypes.
Because UNC Health draws patients from across the southeastern United States, this partnership is also expected to bring in patients who have historically been underrepresented in sarcoma research, helping ensure that future discoveries and clinical trials reflect a broader range of patients.
“RCRF is dedicated to building the infrastructure to support research in rare cancers. This partnership with our colleagues at UNC will increase the quantity and quality of data through direct interaction of our shared research coordinator with patients. We believe this partnership will support individual patients via patient navigation and sample management as well as many patients in the future based on the data collected and shared.” — Dr. Chris Heery, Board Chair, Rare Cancer Research Foundation
“We are thrilled about this collaboration – having an embedded tissue navigator will help us make tissue collection a standard part of our workflow so that we can gather the data we need to answer the pressing questions in sarcoma care. The shared commitment from UNC and RCRF underscores the investment in collaboration to advance rare cancer research in North Carolina and beyond.” — Jacob Stein, MD, MPH, Assistant Professor, Bone and Soft Tissue Oncology Program, UNC Hospitals (UNC Health)
By combining detailed clinical information with preserved tissue samples from a growing, diverse group of patients, this partnership aims to build one of the most comprehensive sarcoma research resources available, helping scientists move more quickly toward a better understanding of these rare cancers and, ultimately, better treatments for patients.
About the Rare Cancer Research Foundation
The Rare Cancer Research Foundation (RCRF) is a 501(c)3 nonprofit organization dedicated to curing rare cancers by breaking down research barriers through patient-powered collaborations. Their initiative pattern.org empowers rare cancer patients from anywhere in the U.S. to consent to donate their tissue and data directly to research for their disease. To learn more, visit pattern.org
About UNC LinebergerComprehensive Cancer Center
The UNC Lineberger Comprehensive Cancer Center at the University of North Carolina at Chapel Hill is North Carolina's only public National Cancer Institute-designated Comprehensive Cancer Center and one of only 58 comprehensive cancer centers in the nation recognized by the National Cancer Institute. UNC Lineberger brings together physicians, scientists and health professionals from more than 40 departments across UNC-Chapel Hill to advance discoveries that improve the prevention, detection and treatment of cancer. As the research engine behind cancer clinical services at UNC Health, UNC Lineberger connects groundbreaking laboratory science with innovative clinical trials, patient-centered care and community-based initiatives that improve cancer outcomes across North Carolina and beyond. Rated as exceptional — the highest category awarded by the National Cancer Institute — UNC Lineberger is dedicated to reducing the burden of cancer through research, education, clinical excellence and community engagement.
Media Contact:
Barbara Van Hare, President, Pattern.org
barbara@rcrf.org