Recruitment Efforts Underway for the Chondrosarcoma Patient Registry

The Chondrosarcoma Foundation in partnership with the National Organization for Rare Disorders (NORD®) has launched the Chondrosarcoma Patient Registry. 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. 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.”

The patient registry is both prospective and retrospective. We want to include patients that range from those who are newly diagnosed to those surviving years with this rare disease. We also want to include chondrosarcoma patients that lost their battle by including answers to survey questions through a designated family member or caregiver.

We are reaching out to Sarcoma Specialists, Patient Advocacy Organizations, Medical Institutions, Patients, Family Members and Caregivers across the globe to inform them about the Chondrosarcoma Patient Registry and encourage anyone with a diagnosis of chondrosarcoma to register.

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