My Pediatric and Adult Rare Tumor Network at the National Institutes of Health (NIH)
The LRG has entered into a new partnership with the National Cancer Institute’s MyPART Network (My Pediatric and Adult Rare Tumor Network). MyPART’s mission is to engage patients as partners in rare tumor research. As an advocacy partner, our aim is to improve the outcomes of patients with rare tumors and identify and engage patients through education and the dissemination of information.
MyPART addresses rare tumor research challenges by collecting data and biospecimens and conducting rare tumor clinics. Genomic and other molecular data on SDH-deficient GIST tumors are collected and then matched to clinical data and patient-reported outcomes. Researchers receive longitudinal data as they are collected.
The clinics are a continuation of the annual NIH Pediatric & Wildtype GIST Clinic which the LRG helped found. This clinic gathers experts to focus on the effects of SDH-deficient GIST and to examine therapeutic options. People with rare tumors benefit from 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 treatment options. This particular clinic was instrumental in our collaborative work with the NIH and other medical institutions.
The NIH Pediatric & Wildtype GIST Clinic is now under the umbrella of the MyPART Network and, through this partnership, we will raise awareness and provide our community with education about these rare GIST tumors. When the multidisciplinary team of experts has updates on their research activities and clinical trials, we will share this important research in a timely way with our GIST patients and their families.