The model underlying the MS Register is that of flexible longitudinal data capture. The original concept was in identifying 3 primary data sources:
- Directly from People with MS
People with MS are asked to register on the website ukmsregister.org and complete PRoMS every 3 months.
- Clinical Data
Our NHS Partner sites consent participants, either at attendance at clinic or by post. Once consented the staff at sites upload a minimal clinical dataset monthly, and update the record at the next patient attendance.
- Other Linkable Data Sources
There are a variety of other data that 1) and 2) can be linked to – within our current operating model Welsh Participants are routinely linked to General Practice and PEDW data contained within the SAIL databank.
Other linkable data can be added to this source, we are currently exploring addition of MRI and the HES datasets.
No identifiable data is ever published by the MS Register