Three years ago, Jeffrey Kramer made a promise to his daughter as she bravely battled the rare bone cancer Chondrosarcoma.
Today, he is taking an important step in honoring that promise with the launch of the Chondrosarcoma Patient Registry — a new registry on NORD’s IAMRARE® platform that will make it possible for patients around the world to share information about a disease that currently has no cure.
Medical professionals have little knowledge of the demographics of those who develop chondrosarcoma and can only speculate on the cellular and genetic origins of the disease. But with the launch of the registry, the Chondrosarcoma Foundation hopes patients, caregivers, and doctors worldwide will share information that will expand knowledge and ultimately create pathways to treatment.
“With this new registry, we want to find answers to critical questions about Chondrosarcoma so we can unlock our ability to find effective treatments and, perhaps down the road, cures,” said Kramer, who founded the Chondrosarcoma Foundation following his daughter’s passing in 2019. “Our hope is that this will facilitate a dialogue to promote effective care, help chondrosarcoma patients make informed decisions, and advocate for more research and clinical trials.”
The registry aims to gather information that might help researchers identify potential treatments and launch trials — and equip medical professionals with information that will improve diagnoses and therapies.
“The success of the registry is dependent upon community participation,” Kramer said. “Our goal is to have as many people as possible engage with the registry including patients, their parents or legal guardians, and designated persons representing those not with us.”
About the Registry
The Chondrosarcoma Patient Registry is a natural history study conducted through the IAMRARE Program, which uses an online portal to collect information about the experiences of people living with chondrosarcoma and their disease progression.
Patients, or their caregivers or guardians, can enter information from anywhere in the world.
The data is confidential and stored securely in the IAMRARE® platform. The Chondrosarcoma Foundation, like other registry sponsors, may share the data with individuals or institutions conducting research or clinical trials, as approved by the study’s governing board that includes scientists, doctors, and patient advocates.
NORD launched the IAMRARE® research program in 2014 to unite patients and research communities on an inclusive and informed path to improving care.
Organizations in the program have successfully leveraged the data they collected to engage researchers and companies to work on their disease.
“This new study has tremendous promise as a strong partnership that engages the patient community and addresses current knowledge gaps for chondrosarcoma,” said Aliza Fink, NORD’s Director of Research Programs. “NORD is thrilled to be a part of driving research and innovation for all the families in the chondrosarcoma community.”
NORD invites other rare disease organizations to learn more about the IAMRARE® research program. You can also reach out to us and learn more about how to start a registry for your community.
– For more information, visit chondrosarcoma.iamrare.org.
