Since the NCI Natural History Study of Rare Solid Tumors opened in January 2019, MyPART has enrolled nearly 250 people with rare tumors, including several family members of people with rare tumors. Natural history studies are not treatment trials and do not provide any intervention, so they are considered extremely safe. Although these studies do not test new treatments, patient participation in natural history studies is critical for potential scientific discoveries that may lead to new treatments, especially for conditions like rare tumors.

Natural history studies allow researchers to gather valuable information about how a health condition progresses over time. In rare disease populations, these data are often lacking or incomplete. Therefore, gathering and analyzing as much information as possible about how rare conditions develop and progress is vital and necessary for scientists to find trends that can lead to the development of novel treatments. In addition, data from natural history studies can also be used to help new treatments get approved by the FDA because the data can sometimes be used to show what happens without any intervention or treatment. In addition, a natural history study is not the same as a patient registry. Natural history studies collect clinical information, medical history information, and patient reported outcomes (PROs), while registries may not collect data that is complete or easily available for research.

To learn more about the Natural History Study of Rare Solid Tumors, visit the MyPART website. We’ve added two new infographics to better help you understand this study. You can learn about how to participate, what samples we collect, and how we use these samples to study rare tumors by viewing these infographics.

Impana Shetty came to NCI in 2017 after completing her bachelor’s degree in biology and psychology from the University of Maryland. Impana wanted to gain experience in the cancer field through research, so she began her work at NCI in the laboratory of MyPART co-leader, Dr. Karlyne Reilly as a Postbaccalaureate IRTA fellow. After spending some time in the lab, she became interested in gaining more clinical experience working with patients. She recently transitioned out of the laboratory and into more clinical work as the MyPART Data Manager. Impana is responsible for entering the data from forms filled out by healthcare staff and patients into the NCI database. She ensures the data entered into the database are accurate and complete, which is fundamental for researchers to find trends and make discoveries from the data collected through the NCI Natural History Study of Rare Solid Tumors.

When asked about her favorite aspect of working with MyPART, Impana says, “One of my favorite parts about being in MyPART is being able to serve these patients! [They] are so selfless in volunteering their time in order to contribute to research and find new treatments. Being a patient with a rare cancer can be pretty lonely, so I’m glad that MyPART can be a source of support during a difficult time.” She also loves working with the MyPART team and says, “Everyone is so kind, hard-working, and passionate about what they do, and it’s amazing to see how they go above and beyond to provide the best care for the patients and their families.”

In her spare time, Impana loves to play tennis and learn different styles of dance, from Indian classical dance to hip-hop! Learn more about the MyPART team here.

The Chordoma Foundation joined the MyPART Network as an advocacy partner in April 2019 to bring their connection with chordoma patients and their families together with our doctors and researchers. In addition to playing an integral role in coordinating the 2019 Chordoma Clinic, they engage chordoma patients in research through informing their community about the NCI Natural History Study of Rare Solid Tumors. This past month, they launched both a blog post and a landing page for the study to help patients understand the importance of participating in this natural history study. Shortly after publishing these two web page resources, over 20 new, potential participants reached out to receive more information about the study. Through a sub-protocol of the Natural History Study of Rare Solid Tumors, researchers will focus on poorly differentiated and de-differentiated chordoma, two rare sub-types of chordoma. However, the study enrolls patients of all ages with chordoma. We are grateful to partner with the Chordoma Foundation to advance research and the discovery of new treatments for chordoma and we look forward to the next in-person Chordoma Clinic, post-pandemic.  

Rare Disease Day at NIH, March 1, 2021. Mark your calendars for this important virtual event! MyPART is excited to participate in Rare Disease Day 2021. This year, there will be a session on rare cancers with a panel highlighting the success of advocacy organizations in accelerating advances in research and new therapies. We will share more information, including the website for the 2021 event, as it becomes available. Learn about Rare Disease Day at NIH 2020 here.