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Challenges for Rare Tumor Researchers

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We know that studying rare tumors is difficult. Finding treatments for rare cancer requires a multi-institutional effort to collect specimens for research and accrue patients to clinical trials. Robust model systems often don’t exist. These issues put rare tumor researchers at a disadvantage and discourage innovation in the field.

How MyPART Is Addressing Challenges in Rare Tumor Research

MyPART is addressing rare tumor research challenges through data and biospecimen collection and sharing, clinics, and workshops.


MyPART is collecting genomic and other molecular data on rare tumors that are matched to clinical data and patient-reported outcomes. Data will be made available to researchers as they are collected. We are conducting longitudinal studies so researchers can follow the effects of treatments on rare tumors over time.

Learn more about how NCI is bringing patient data to life and making it more accessible for researchers by watching the below video from NCI's Center for Biomedical Informatics and Information Technology


As part of the Natural History Study of Rare Solid Tumors, we are collecting biospecimens from people with rare tumors to catalog the following data:

  • Genome
  • Epigenome
  • Transcriptome
  • Immunolome
  • Gut microbiome

Samples not needed for these analyses will be banked for future studies.


For some rare tumors, we hold yearly multi-day clinics at the NIH Clinical Center in Bethesda, MD, in collaboration with advocacy groups. These clinics bring experts and people with rare tumors from around the country together to focus on how the rare cancer affects the patient and how therapies affect the cancer.

People with rare tumors benefit by having their cases reviewed by many experts at once and by spending time with others with the same disease.

Experts benefit by seeing many patients at the same time and exchanging ideas on the best way to care for them. These clinics often form the basis for future collaborations in rare tumor research.


In addition to clinics, we promote communication and collaboration through workshops and symposia. These workshops bring together basic and clinical researchers, advocates, and FDA representatives to discuss how to overcome barriers to developing new treatments. Discussions are facilitated through presentations and breakout sessions. These workshops often allow researchers to take stock of where the field is and where it is headed. Learn more about our recent workshops.

How to Get Involved

If you are interested in collaborating with us on rare tumor research, please contact us at  

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