Patient Information: Questionnaires and Surveys

Patient Information Sheet for Questionnaires and Surveys

How to Join the Study

If you are currently receiving care from one of the specialist clinics listed below, please use the contact details to get in touch, or speak to your clinician at your next appointment:

• • Leeds Community Health Care NHS Trust (contact: [email protected])
  • Hertfordshire Community NHS Trust (contact: [email protected])
  • University Hospitals of Leicester NHS Trust (contact: [email protected])
  • Cornwall Partnership NHS Foundation Trust (contact: [email protected])
• Or call 0113 3924 734.

If you have not been seen at a specialist ME/CFS or Long COVID clinic within the last 3 years, please join the study by following the instructions below:

Autonom-e 

1. Download the Autonom-e App on your device: Autonom-e App Links
2. or visit the Autonom-e website: Autonom-e Webapp
3. Log in and find the HERITAGE study area
4. Open the Patient Information Sheet (PIS)
5. Complete the consent form
6. Start your participation

 

Ethics and Data Protection:

HERITAGE has received ethical approval from an HRA Research Ethics Committee. All data will be anonymised and stored securely in compliance with GDPR and the UK Data Protection Act (2018).

Privacy Notice

Your data will be handled securely and used only for research purposes. For more details, see our Privacy Notice: Research Participant Privacy Notice | Data protection at the University

HERITAGE Privacy Notice for Participants

Additional Resources

NHS Patient Advice and Liaison Service (PALS):

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Phone: 0113 206 6261

University of Leeds Research Governance Office:

Email: [email protected]

Phone: 0113 343 7587

Data Protection Officer (University of Leeds):

Email: [email protected]

Phone: 0113 243 1751

Information Commissioner’s Office (ICO):

https://ico.org.uk/make-a-complaint/

Phone: 0303 123 1113