Participating in a data collection program is one of the most important things that families of a child with a FOXP1 genetic disorder can do.
Having a robust database will enable the International FOXP1 Foundation (IFF) to generate more interest from clinicians, researchers and drug developers to research, test, and develop drugs, therapies, and a FOXP1 natural history study.
The FOXP1 community is partnering with RARE-X [a 501(c)(3) nonprofit] to build a Data Collection Program for our families. When you participate in the FOXP1 Data Collection process, you will help accelerate research, therapy and drug development, as well increasing the FOXP1 knowledge base.
The FOXP1 genetic disorder 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. FOXP1 families will benefit from a streamlined process for collecting research-ready data in a phased approach.
We are all pioneers in the field of FOXP1 genetic research
Data Collection Webinar March 13 2022
RARE-X introduces the general security and design of the database, and the process to enroll and enter your loved ones data.
Why participate in Data Collection
How to upload Genetic Reports
Data Standards and RARE-X
Privacy and Security for
Patient Data Collection
What is Data Governance?
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