My Sjögren's Diary
A secure patient database to track Sjögren’s Syndrome symptoms and support research
The Cambridgeshire regional support group for the British Sjögren’s Syndrome Association (Sjögren’s Cambridgeshire) is very interested in a wide range of research topics. Together, after consulting with rheumatologists and other patient groups, we decided the best way to serve their ambitions would be to create an online patient portal.
The portal will be a safe, secure and encrypted website, enabling anyone with Sjögren’s Syndrome to interact with their own health data. Participants can list their symptoms and medications (including dietary and non-prescription supplements) and track them over time. Participants may wish to share this information with healthcare providers, to show how symptoms react to changes in lifestyle or new treatments. However, this type of patient-reported data is also very interesting to researchers, as it can be hard to document fluctuations in ‘invisible’ conditions like Sjögren’s Syndrome. Researchers will be able to apply for anonymous datasets through the existing UK Primary Sjögren’s Syndrome Registry.
We secured the 2018 Research Award from the British Sjögren’s Syndrome Association, and have developed the website through multiple workshops with Sjögren’s Cambridgeshire, database programmers and rheumatologists. This project is now led by Prof Wan-Fai Ng, and we are just awaiting governance approvals to launch. We have dedicated this work to Carol Burns, co-founder of Sjögren’s Cambridgeshire, and driver of this project. Carol very sadly passed away in 2020, and is dearly missed.