The Chandler Project has partnered with RARE-X, a Global Genes program, to develop an Achondroplasia & Other Skeletal Dysplasias (ACH&OSD) Data Collection Program to help accelerate research and the development of new drugs, devices, and other therapies for those with ACH&OSD. On November 30, 2023, TCP kicked off the launch along with Growing Stronger and world-renowned skeletal dysplasia expert Dr. Ravi Savarirayan.
The ACH&OSD DCP will be patient-owned but enabled by RARE-X technology. All data governance, consent support, and data security will be put in place by RARE-X. ACH and SD families will benefit from a streamlined process for collecting research-ready data in a phased approach. Other benefits of the DCP include:
• Inform researchers how achondroplasia and skeletal dysplasias change over time
• Enable better data to use in clinical trials
• Give patients the opportunity to participate in clinical trials
• Reduce the time it takes to study new medicines
• Speed up the time to get treatments to patients
• Enable the use of data as a placebo (instead of actual patients) in a clinical trial
RARE-X is a 501(c)(3) nonprofit created by leaders in patient advocacy, medical research, biopharma, and technology.
RARE-X is piloting a series of demonstration projects, in partnership with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support researchers developing treatments for rare disease patients.
RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard and other technology partners, which will support patients (in data collection, structuring, and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).
Since RARE-X is a nonprofit, there is no cost to you or the achondroplasia and skeletal dysplasia community. Our goal is to make the process as easy as possible for YOU.