New Patient Registry Creates A Platform to Share Patient Journeys with Chondrosarcoma
The Chondrosarcoma Foundation in partnership with the National Organization for Rare Disorders (NORD®) has launched the Chondrosarcoma Patient Registry. Chondrosarcoma is a rare bone cancer that currently has no cure. Its prevalence and origin are unknown. Because chondrosarcoma is rare, there is also a lack of knowledge of the demographics of those who develop chondrosarcoma and only speculation on the cellular and genetic origins of the disease.
The patient registry creates a platform for patients around the world to strengthen their voices and provide critical information about their experiences living with this rare bone cancer. This global resource will provide data for researchers to use to advance drug development and treatment options to help improve patient care.
“Our goal is to enroll as many patients, or their parents or legal guardians, as possible. The study is global and both prospective (including those with a diagnosis of chondrosarcoma) and retrospective (including those who passed away as a result of chondrosarcoma). “Combined with the input of experts, this will ensure that our surveys will collect the information necessary to advance research and tell the stories of patients with chondrosarcoma.” said Jeffrey Kramer, founder and president. “We are launching this initiative to help fill in the missing information researchers and medical experts need to advance research and one day, find a cure.”
For more information and to become part of the Chondrosarcoma Patient Registry, visit: https://chondrosarcoma.iamrare.org