DATA COLLECTION
Where parents and clinicians come together to help advance research!
Participating in our data collection program is one of the most important things that families of a child with CMT4B3 can do.
Having a robust database will enable us to generate more interest from clinicians, researchers and drug developers to research, test, and develop drugs, therapies, and a CMT4B3 natural history study.
The CMT4B3 community is partnering with RARE-X [a 501(c)(3) nonprofit] to strengthen our Data Collection Program for our families. When you participate in the CMT4B3 Data Collection process, you will help accelerate research, therapy and drug development, as well increasing the CMT4B3 knowledge base.
The CMT4B3 Rare-X Data Collection Program 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. CMT4B3 families will benefit from a streamlined process for collecting research-ready data in a phased approach.
We are all pioneers in the field of CMT4B3 genetic research!
Watch our Zoom Launch!
About RARE-X
RARE-X is a 501(c)(3) nonprofit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.
RARE- X is collaborating 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, 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 CMT4B3 genetic disorder community.
To learn more about RARE-X and rare disease data collection go to rare-x.org