Chondrosarcoma Foundation, NORD and Inhibrx to Establish New Patient Registry/Natural History Study
In honor of Chondrosarcoma Awareness Day we are pleased to share this announcement.
BOWIE, Maryland, Feb. 6, 2022–The Chondrosarcoma CS Foundation is teaming up with the National Organization for Rare Disorders (NORD) to establish a Chondrosarcoma Patient Registry to advance research, clinical trials and improve the treatment of Chondrosarcoma, a rare bone and soft tissue cancer. The effort is being sponsored by Inhibrx, a California-based biotechnology company. The Chondrosarcoma Foundation will become the 44th Foundation to utilize NORD’s IAMRARE Patient Registry Platform.
The Chondrosarcoma Patient Registry will be a prospectively-planned natural history study that will result in the most comprehensive understanding of Chondrosarcoma and its progression over time. Patients and Caretakers will be able to find answers to critical questions and make informed decisions about their care from an aggregate database on socio-demographics, diagnostics, disease progression, management of care, quality of life and treatment outcomes.
The Chondrosarcoma Foundation is a 501(c)(3) Non-Profit Organization. Its mission is to educate the public and advocate for patients with Chondrosarcoma. An estimated 4,500 people are diagnosed with Chondrosarcoma in the United States annually and over 9,000 are diagnosed worldwide each year. The organization was founded by Jeffrey Kramer after his daughter Shayna fought Grade 3 Conventional Chondrosarcoma, and lost her battle in November 2019 at the young age of 28. Shayna expressed a desire to educate the world about Chondrosarcoma so she could help others suffering from this rare, deadly disease. Mr. Kramer made a promise to his daughter that he would create the Chondrosarcoma Foundation to honor her legacy and it was incorporated six months later.
According to Mr. Kramer, “Our mission is to bring together sarcoma specialists, oncologists, clinical researchers with patients and caretakers to exchange valuable information and facilitate a dialogue to promote effective care, help chondrosarcoma patients make informed decisions and advocate for more research and clinical trials.”
In the effort to raise awareness of Chondrosarcoma and to support patients who suffer from this rare disease, the Chondrosarcoma Foundation has spent the past twenty months hosting virtual dialogues with clinical researchers and sarcoma experts to discuss new treatments, diagnostic techniques and medications. Board members have contributed professional position papers and commentaries. The Foundation honors Shayna’s birthday, February 6, by promoting Chondrosarcoma Awareness Day.
The Patient Registry will be designed to assist the medical community with the development of recommendations for standards of care, assist researchers studying the pathophysiology of Chondrosarcoma and support the design of clinical trials that explore new and innovative treatments.