STXBP1 Disorders Data Collection Program
See how sharing patient information will collectively make a difference in finding a cure for STXBP1 disorders and other rare disease
The STXBP1 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 STXBP1 Disorders Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.
The STXBP1 Disorders 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. STXBP1 Disorders families will benefit from a streamlined process for collecting research-ready data in a phased approach.
Learn More in this recording from Feb 2022
Program Launch of the STXBP1 Disorders Data Collection Program
Jointly hosted by STXBP1 Disorders and RARE-X
Benefits of Participating in our Data Collection Program
We are building the STXBP1 Disorders Data Collection Program to …
· Inform researchers how STXBP1 disorders 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
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 STXBP1 disorders 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.