Chondrosarcoma Foundation Initiates a Fund-Raising Drive to Create a Patient Registry to Promote Research and Improve Care
In our on-going effort to promote more research, clinical trials, improve treatment and seek a cure for Chondrosarcoma, the CS Foundation is in the process of establishing a contractual partnership with NORD: National Organization for Rare Disorders to create a Patient Registry/ Natural History Study exclusively for Chondrosarcoma Patients. Such a registry does not exist and is desperately needed. When completed this data driven registry will provide tracking to determine what clinical trials, medications and treatments are effective or not effective and allow patient’s suffering from Chondrosarcoma to check their progress from an aggregate database and compare their journey to everyone else participating in the registry. The registry will assist patients and clinicians to track their progress, make informed decisions regarding their care and will serve to enhance research and clinical trials in the effort to find solutions and ultimately to find a cure to beat this rare bone and soft tissue cancer.
We are seeking donations to raise funding for the development /on-boarding process, review by the IRB: Institutional Review Board as well as hire a Graduate Medical Research Assistant to assist us in building the Patient Registry / Natural History study, analyze and report findings. All donations received will be used to fund the Patient Registry. This effort is timely and will make a difference. After we achieve this, we can say we “have skin in the game.”
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NORD: National Organization for Rare Disorders is a charitable organization representing over 7,000 rare diseases. It is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases. In October of this year after vetting the credentials of the Chondrosarcoma Foundation, the board of directors of NORD voted to have our Foundation join NORD. NORD’s membership includes 350 patient organizations representing rare disorders. WE are honored to be joining the organization and participate in their effort to cure rare cancers like Chondrosarcoma.
To address the special needs of those developing treatments for rare diseases, NORD has created a natural histories patient registry platform called IAMRARE with extensive input from FDA, NIH, patients, organizations and experts in the field. The platform is easy to use and allows patients and organizations to inform and shape medical research and translational science for rare diseases by launching high-quality, customized registries to collect the data needed to define the natural progression of their disease.
As soon as we raise the funding and hire our Graduate Research Assistant, the Chondrosarcoma CS Foundation will contract with NORD: National Organization for Rare Diseases to become the 41st Foundation and join 13,600 patients with rare disorders to utilize their IAMRARE Patient Registry Platform. The onboarding process to build and create the natural history study is expected to take six months and the roll out of the Chondrosarcoma Patient Registry is expected to occur before June of 2022. It is required that all of the documents used in the Patient Registry will (1) be secure and adhere to all confidentiality / privacy standards, (2) be in compliance with all NORD IAMRARE Patient Registry standards and (3) be reviewed and approved by an IRB: Institutional Review Board.
For more information:
Overview of the Patient Registry / Natural History Study
What will the Chondrosarcoma Patient Registry do?
- Provide a convenient online platform for patients, caretakers or their legally authorized representative to report cases of Chondrosarcoma including their type and grade.
- Conduct a prospectively-planned natural history study that will result in the most comprehensive understanding of Chondrosarcoma and the progression over time.
- Characterize and describe the Chondrosarcoma patient population as a whole.
- Assist the medical community with the development of recommendations for standards of care.
- Assist Chondrosarcoma patients to track their care and make informed decisions by comparing their treatment to an aggregate database.
- Assist researchers studying the pathophysiology of Chondrosarcoma tumors.
- Support the design of clinical trials that explore new and innovative treatments.
The Chondrosarcoma Patient Registry will collect the following data:
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
For more information contact:
Chondrosarcoma CS Foundation, Inc.
ATTN: Jeff Kramer, President
Phone: 301-352-3042 / 301-404-7100