See how sharing patient information will collectively make a difference in finding treatments for Ring14 and related disorders.
Participating in a data collection program is one of the most important things that families of a child with a Ring14 or related disorders can do. Having a robust database will generate more interest from clinicians, researchers and drug developers – enabling us to get to effective treatments for our children. Participation includes completing a set of carefully designed, validated, caregiver reported surveys on the health of your affected child, who has Ring14 or a related neurodevelopmental disorder of the 14th chromosome.
The Ring14 community is partnering with RARE-X [a 501(c)(3) nonprofit] to build a Data Collection Program (DCP) for our families. When you participate in the Ring14 and related disorders Data Collection Program, you’ll help accelerate research and the development of effective treatments.
The Ring14 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. Ring14 families will benefit from a streamlined process for collecting research-ready data in a phased approach.
To learn more, watch our Community Launch Video, which was jointly hosted by Ring14 USA and RARE-X, recorded on August 10th, 2022.
BENEFITS OF PARTICIPATING IN OUR DATA COLLECTION PROGRAM
We are building the Ring14 Data Collection Program to:
- Inform researchers how Ring14 and related disorders manifest and changes over time
- Provide opportunity for families to compare their experiences against others
- Speed up the time to get effective treatments to patients
- Provide assess to clinical trials
- Enable the use of data as a placebo (instead of actual patients) in a clinical trial
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 Ring14 community.
Learn more about RARE-X here.
Our goal is to make the process as easy as possible for you. By clicking on the button 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.
Want to learn more? Watch these short video by RARE-X.
