SETBP1 Data Collection Program
See how sharing patient information will collectively make a difference
in finding targeted treatments for SETBP1-related disorders and other rare disease
The SETBP1 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 SETBP1 Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.
The SETBP1 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. SETBP1 families will benefit from a streamlined process for collecting research-ready data in a phased approach.
FIND OUT MORE IN THIS RECORDED WEBINAR FROM MARCH 2022
Program Launch of the SETBP1 Data Collection Program
Jointly hosted by SETBP1 Society and RARE-X
BENEFITS OF PARTICIPATING IN OUR DATA COLLECTION PROGRAM
We are building the SETBP1 Data Collection Program to …
- Inform researchers how SETBP1-related disorders change over time
- Enable better data to use in clinical trials
- Provide researchers & drug providers data to learn about SETBP1-related disorders
- 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 ADVANTAGES OF PARTICIPATING IN RARE-X
- If eligible, you may have the chance to participate in clinical trials
- Reach more researchers worldwide – more eyes on data and symptoms
- Ability to update a change in symptoms at any time
- Ability to manage who uses your data
- Speeds up research and drug development
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.
- 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.
Since RARE-X is a nonprofit, there is no cost to you or the SETBP1 disorders community.
Learn more about RARE-X here.
Our goal is to make the process as easy as possible for you. 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 by clicking the Join the Study link above.