FOXP1 Data Collection Program
What is Data Collection?
Participating in a data collection program is one of the most
valuable ways for families of children with FOXP1 Syndrome to
contribute to research. Data collection involves gathering and
organizing information about the condition, such as medical
histories, symptoms, treatments, and outcomes, which can be used to identify patterns and advance scientific knowledge. A strong database will help the International FOXP1 Foundation (IFF) attract more attention from doctors, researchers, and drug developers, speeding up the discovery of treatments, therapies, and the development of a natural history study for FOXP1.
The FOXP1 community is partnering with RARE-X, a nonprofit, to create a Data Collection Program. By joining, you'll help advance research, drug development, and expand our understanding of FOXP1 syndrome. The program will be patient-owned but supported by RARE-X technology, ensuring data security, consent, and privacy. Families will benefit from an easy, step-by-step process to share research-ready data, which is crucial for creating meaningful scientific advances.
We are all pioneers in the field of FOXP1 genetic research
RARE-X Introduction Data Collection Program
Watch Informational Recordings on RareX
Explore our informational videos to learn more about RARE-X and how their platform is empowering families and researchers in the rare disease community. These videos provide a clear overview of how the RARE-X Data Collection Program works, its benefits, and how you can get involved in advancing research and improving the future for those affected by rare diseases like FOXP1 syndrome.
Why participate in Data Collection
by RARE-X
Data Standards and RARE-X
How to upload Genetic Reports
Privacy and Security for
Patient Data Collection
What is Data Governance?
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 FOXP1 genetic disorder community. To learn more about RARE-X and rare disease data collection go to rare-x.org