Your data to improve lives: The SRUK Patient Registry |
Scleroderma and Raynaud’s UK is the only UK charity dedicated to improving the lives of people living with Scleroderma and Raynaud’s. Our research strategy aims to advance research into the areas of early diagnosis and detection, precision medicine, quality of life and the causes of Scleroderma and Raynaud’s to improve outcomes for those living the with the conditions.
One of the biggest barriers that researchers identified to driving forward research is a lack of data. Scleroderma experts have suggested that a SRUK Patient registry would be a powerful resource to gather data and real-world evidence to allow SRUK and others to better advocate for improved care and access to treatments to improve patient outcomes.
The registry would take the form of a secure database which would hold anonymised health data on those living with Scleroderma and Raynaud’s.
SRUK wishes to give all those living with the condition, no matter where they are treated, the opportunity to participate in and report their ‘Patient Reported Data’ to the registry via a secure website or App. Your data would be anonymised to remove any information which could identify you and held in a secure database. Researchers would apply for permission to access the data for research purposes. Applications would be considered by a Registry Governance Group which would include patients and clinical/scientific experts.
Your opinions count: Have your say on this project!
The SRUK Patient Registry can only be successful if people living with Scleroderma and Raynaud’s are willing to share their data on a regular basis. If you are aged 16 years or over or are a carer for a child or family member with Scleroderma and/or Raynaud’s complete our survey to share your views.
Your opinions count: Have your say on this project!
The SRUK Patient Registry can only be successful if people living with Scleroderma and Raynaud’s are willing to share their data on a regular basis. If you are aged 16 years or over or are a carer for a child or family member with Scleroderma and/or Raynaud’s complete our survey to share your views.
The survey is anonymised but we are holding a prize draw to which survey respondents will be entered. You don't have to leave your contact details, but if you'd like to be entered into the prize draw to win a Heat Holder Snuggle Up Thermal blanket, please leave your email details at the end of the survey.