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The Natural History Study of Rare Solid Tumors has just passed its two-year anniversary of patient enrollment! Check out MyPART by the numbers below and view the enrollment statistics.
In two years, we have achieved:
Enrollment Statistics:
The Natural History Study of Rare Solid Tumors has enrolled 258 participants as of January 2021. View the details of enrollment by age, sex, and diagnosis below.
 Video for Healthcare Providers:
We recently created a video tailored for healthcare providers about the Natural History Study of Rare Solid Tumors. The video explains how to easily refer patients to the study and why natural history studies are important for the study of rare conditions. View the video here. To learn more about how to participate in the study, you can view additional videos on the MyPART website here.
Dr. Jaydi Del Rivero is a physician scientist working with MyPART on the understanding and treatment of neuroendocrine tumors or NETs. Dr. Del Rivero grew up in Veracruz, Mexico and earned her MD degree from the University of Veracruz Medical School (Veracruz, Mexico). After completing the residency program in internal medicine from New York University–Langone Medical Center, she came to the NIH as a fellow in the Inter-Institute Endocrinology Fellowship Program, where she focused on paragangliomas and pheochromocytomas – rare neuroendocrine tumors (NETs). These tumors grow in the glands throughout the body and in the cells that produce hormones. She pursued more advanced training in endocrine malignancies under the mentorship of Dr. Steve Libutti and finally returned to the NIH as a fellow in the NCI Medical Oncology Fellowship Program. She became an assistant research physician in 2017.
Dr. Del Rivero is an expert in neuroendocrine tumors and brings this expertise to MyPART. She explains, “having trained in both oncology and endocrinology has enhanced my passion for the treatment of [advanced] neuroendocrine tumors (NETs). These are a rare and heterogeneous group of malignancies with unique tumor biology, natural history, and clinical management issues with only a few FDA approved therapies with limited efficacy.” She enjoys pursuing her work on NETs at the CCR and says, “[CCR] is a unique place for leadership to engage these patients in cancer research in which MyPART plays a key and cardinal role to advance the care of these rare tumors.” Dr. Del Rivero runs two sub-protocols for MyPART’s Natural History of Rare Solid Tumors for NETs and adrenocortical carcinoma (ACC).
Dr. Del Rivero has been an integral MyPART team member. Describing the MyPART Network, she says “one of MyPART’s goals is to [strengthen] collaborations with basic and clinical researchers… to understand the molecular pathways and to develop effectives therapies for rare cancers and to partner with patients and [advocates] and together move the science forward... I am extremely proud, fortunate and honored to be able to contribute to this mission!” In addition to working with MyPART, Dr. Del Rivero also serves on the Board of Directors of the North American Neuroendocrine Tumor Society (NANETS) where she works with fellow experts to advance the understanding and treatment of NETs.
When asked about her inspiration to continue this work, she explains “My patients are my everyday motivation and inspiration…I am thankful to each patient and their families for their contributions and continued efforts in partnership with me towards advancing the science and seeking understanding, treatment, and hopefully someday a cure.”
Read more about Dr. Del Rivero in the NIH Catalyst - a publication about intramural research at the NIH.
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Rare Disease Day is celebrated around the world every year on the last day of February to raise awareness for rare diseases and show the impact that rare diseases have on patients' lives. Each year, the NIH hosts Rare Disease Day at NIH to share ongoing research efforts and highlight patients' stories. This year, MyPART is excited to participate in a panel focused on rare cancers. Dr. Abby Sandler will moderate a panel of leaders from various advocacy organizations and research programs to discuss how they have helped advance rare cancer research and how their organizations have developed into successful rare cancer efforts. The session, entitled “From Kitchen Tables to Changing Paradigms — Advocacy as a Driving Force in Advancing Progress in Rare Diseases Research” will include the following panelists:
- Lennie Woods, Co-Founder and Executive Director, Sara’s Cure
- Jim Palma, Executive Director, TargetCancer Foundation
- Jeanne Whiting, Co-Founder, Desmoid Tumor Research Foundation
- Josh Sommer, Co-Founder and Executive Director, Chordoma Foundation
- Timothy Babich, Co-Founder and Director, the RUNX1 Research Program
- Eric J. Sherman, M.D., Medical Oncologist, Memorial Sloan Kettering Cancer Center
NIH Rare Disease Day will be held on March 1st, 2021. Visit the website here to register for this virtual event and view the agenda. Throughout the day, follow the hashtag #RDDNIH on Twitter to catch commentary and live updates about the event.
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The Rucker Collier Foundation was founded in late 2020 to raise awareness and provide support to patients and families experiencing sclerosing epithelioid fibrosarcoma, or SEF. SEF is a rare form of sarcoma that is often misdiagnosed. The Rucker Collier Foundation includes a medical advisory board of SEF experts and the website hosts relevant literature and other supportive resources for families experiencing SEF. The foundation was named after Rucker Collier, a young boy who lost his battle with SEF. His family now leads the foundation to pave a path forward for a cure. MyPART is delighted to partner with the Rucker Collier Foundation and work together to find treatments and improve the lives of patients with this rare sarcoma.
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