The HCU Networks have partnered with RARE-X to drive a Data Collection Program for the homocystinurias.  The RARE-X platform enables the gathering, structuring and sharing of critical lived experience data at scale. This lived experience data will help accelerate research, drive disease understanding and enable the development of new diagnostic tools and future treatments and cures. 

To learn how your participation in a Data Collection Program can accelerate research and drive the development of future treatments and cures, view the video below:

• Inform researchers how homocystinurias impact people living with it and change over time 
• Enable better data to use in drug development and clinical trials 
• Give people living with homocystinurias the opportunity to participate in clinical trials 
• Reduce the time it takes to study new medicines 
• Accelerate the time to get treatments to people living with homocystinurias 
• Enable the use of data as a placebo (instead of actual patients) in a clinical trial

Hear from Danae Bartke, Executive Director of HCU Network America, as she explains the Data Collection Program:

The Homocystinurias Data Collection Program is patient-owned and enabled by RARE-X technology. All data governance, consent support, and data security are delivered by RARE-X. Privacy is something RARE-X takes seriously and patient names are never revealed.

Click the button below to access the downloadable flyer and view the steps Rare-X takes to ensure patient privacy and security via the video:

RARE-X is a 501(c)(3) non-profit 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).