Alternating Hemiplegia of Childhood Foundation
Rare-X Data Collection
The AHC community is partnering with RARE-X, a 501(c)(3) nonprofit organization, to build a Data Collection Program for AHC families. When you participate in the AHC Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.
The AHC Community is building the AHC Data Collection Program to …
- Inform researchers how AHC changes 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
The AHC 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. AHC families will benefit from a streamlined process for collecting research-ready data in a phased approach.
This will become the “hub” to which all other databases can connect, streamlining the research process.
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 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, 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 AHC community. RARE-X’s mission is to serve patients, and drive research towards therapeutic development.
Our goal is to make the process as easy as possible for you. By clicking on the link below, you can learn more about this one-of-a-kind Data Collection Program and begin the first step in making your patient information available to researchers.
Collaboration is key to our success!
