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: My Sjögren’s Diary.
The Diary is 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 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. Participants with primary Sjögren’s Syndrome can choose to sync their data with the UK Primary Sjögren’s Syndrome Registry, which is available for approved research studies.
We secured the 2018 Research Award from the British Sjögren’s Syndrome Association, and developed the Diary with Sjögren’s Cambridgeshire, database programmers and rheumatologists. It is now led by Prof Wan-Fai Ng at Newcastle University. We dedicate 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.