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.
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.


Section 1: About You

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* 1. Which of the following apply to you? If you have more than one please tick the most severe.

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* 2. Which age range best describes you?

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* 3. What sex were you assigned at birth?

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* 4. Is your gender identity the same as the sex you were assigned at birth?

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* 5. Which ethnic group best describes you?

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* 6. Where do you live?

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* 7. Which NHS Trust/hospitals do you visit for MOST of your medical appointments for the condition mentioned in question 1?

Section 2 - Your perspectives on sharing, linking, and access to data
Sharing Data

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* 8. Patient reported data provides information from the perspective of the person living with Scleroderma and Raynaud’s. It can complement data collected during medical visits to provide a more complete picture of a person’s experience of Scleroderma and Raynaud’s.

Would you be willing to complete questionnaires to provide information relating to the severity of symptoms of your Scleroderma/ Raynaud’s and its impact on your day-to-day life? Information submitted would be anonymised.

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* 9. Which information would you be willing to share with the registry? Your information will be anonymous – so you cannot be identified by those accessing the data for research.

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* 10. How frequently would you be willing to share your patient reported data with the Registry?

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* 11. SRUK hopes that registry participants’ ‘patient reported data’ could be anonymously linked to their NHS and hospital data at selected clinical sites to provide a comprehensive picture of Scleroderma and Raynaud’s for research.

Would you provide consent to link your data?

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* 12. Data held within the registry will be anonymised by default for research purposes.

There is a possibility that the registry could be used to find people suitable for clinical trials of new treatments.

If you were judged to be suitable for a clinical trial would you wish to be contacted and invited to participate?

Access to Data

To enable research into Scleroderma and Raynaud’s and improve access to care and treatments for those with the conditions, external parties such as academic researchers, clinicians, and companies developing treatments are likely to need to access the anonymised dataset to carry out their research. Access would be reviewed by a Governance Group comprising independent experts and people living with Scleroderma and Raynaud’s.

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* 13. Would you be willing for researchers (at universities) to access your anonymised data for the purposes of research?

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* 14. Would you be willing for clinicians/other medical professionals to access your anonymised data for the purposes of research?

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* 15. Would you be willing for companies (including pharmaceuticals) to access your anonymised data for the purposes of research, including the development of new treatments?

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* 16. Would you be willing for your anonymised data to be shared with researchers outside of the UK, or other patient registries outside of the UK?

Section 3 - Your digital access and confidence, and use of other digital tools

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* 17. Which of these statements best describe how often you use the internet?

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* 18. What devices do you use to access the internet? Tick all that apply.

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* 19. Which of these statements best describe your confidence in using the devices you use to access the internet?

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* 20. Do you use smartphone/tablet apps?

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* 21. Do you use any health/fitness apps regularly (e.g. Fitbit, Garmin Connect, NHS Log-in, SRUK STAR App)?

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* 22. Which health apps do you use? Tick all that apply.

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* 23. Which of these statements best describe your confidence in using smartphone or tablet health apps or their internet equivalents?

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* 24. Which of these statements best describe how much you enjoy using smartphone or tablet health apps or their internet equivalents?

Section 4 – Your Motivation with regards to the SRUK Patient Registry

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* 25. From what you’ve read in this survey, how motivated do you feel to participate in the SRUK Patient Registry?

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* 26. The survey is anonymous, but we may be running focus groups to further explore our community’s attitudes to data sharing in the future.

If you would like to be involved in any focus groups about this project or sign up to receive more information on this project or about SRUK, please share your email address at the end of the survey.

Please select any options you would like to hear more about.

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