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Agreement Between Children’s Tumor Foundation and Indiana University Biorepository Establishes Robust Resource for NF Researchers

The Children’s Tumor Foundation (CTF) and the Developmental and HyperActive Ras Tumor Specialized Programs of Research Excellence (DHART SPORE) Biorepository at Indiana University School of Medicine will merge their neurofibromatosis (NF) tissue collections under an agreement that strengthens the work of both institutions and the field of NF research.

CTF’s biobanking program began in 2013. Its goal: to ensure that any NF researcher (academic or for-profit) with great ideas could obtain high-quality human tissue, free of charge and with no strings attached.

The CTF biobank began its collection with cutaneous neurofibromas that had been removed surgically. In 2014, strong interest from the NF community in donating tissue led to the establishment of a post-mortem body donation program, allowing the program to bank tissue from patients with NF1, NF2, or schwannomatosis. This was accomplished in collaboration with the National Disease Research Interchange (NDRI), providers of a nationwide tissue recovery service. Another collaboration, with the Neurofibromatosis Therapeutic Acceleration Program (NTAP) at Johns Hopkins, has made a collection of cell lines from these tissues openly available.

As CTF’s collection grew, it became clear that a full-time biobank manager was needed to run the project. CTF began looking for a partner that could provide this, while maintaining the original intent to  provide an open resource.

In partnering with Indiana University School of Medicine’s DHART SPORE program, CTF found a partner that has the same philosophy and the capacity to provide dedicated biorepository personnel and facilities. Under the new agreement, CTF will continue facilitating patient requests to donate tissue. IU School of Medicine will provide biorepository services including full-time management and distribution, continuing its partnership with Riley Hospital for Children at IU Health in providing clinical care for NF patients. CTF will have a voice in determining tissue usage, with two voting seats on Indiana’s Biospecimen Review Access Committee.

This represents a win-win for both organizations, and most importantly for the researchers and patients working together to end NF.

View biobank details
The catalog, online application, and MTA for the CTF samples are all available on the website:

About IU School of Medicine
IU School of Medicine is the largest medical school in the U.S. and is annually ranked among the top medical schools in the nation by U.S. News & World Report. The school offers high-quality medical education, access to leading medical research and rich campus life in nine Indiana cities, including rural and urban locations consistently recognized for livability.

About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in every 3,000 births across all populations equally. There is one approved drug for the treatment of inoperable plexiform neurofibromas – a subset of the NF1 patients. The Children’s Tumor Foundation’s mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending all manifestations of NF.