Research from MSUK
We’ve created this space in which we can share opportunities to engage in research from Metabolic Support UK!
The HCU Data Collection Programme
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.
Click the button below to find out more and get involved:
Generation study: Survey
The Generation Study is sequencing 100,000 newborns in the UK to detect rare genetic conditions. Run in partnership with the NHS, it aims to improve diagnosis and treatment through genome sequencing.
The study covers 200 conditions, half of which are inherited metabolic disorders, all chosen because they appear early and are treatable if detected in time.
We’d love your input! Our 10-minute survey gathers thoughts and experiences on The Generation Study.
📢 Click below to take the survey!
