What is the MSBase Registry?
An international online registry for Multiple Sclerosis researchers.
The MSBase Registry is a unique international collaboration dedicated to sharing, tracking and evaluating outcomes data in multiple sclerosis (MS) and other neuro-immunological diseases (NIDs).
The MSBase Foundation has collaborated with participating MS physicians and their healthcare teams to collate the largest organised repository of longitudinal, 'real-world' MS patient data. The Registry commenced in 2004 and has accumulated over 85,000 patient records from 45 participating countries.
The collaboration aims to better our understanding of MS and improve healthcare for those living with MS by answering epidemiological questions that can only be addressed by prospective assessments of many thousands of patient records. The MSBase simplifies the collection of epidemiological information by providing an electronic Data Entry System. The data entry system software is useful in clinical practice for patient tracking and record management, and is freely available to members, who in turn support the collaborative research initiative.
The MSBase Registry is owned and operated by the MSBase Foundation Ltd, a not-for-profit company registered in Australia. The Foundation is governed by a Global Board of Directors that advises and supports the work of the Registry. The MSBase Scientific Leadership Group (SLG) specifically advises the Foundation on the scientific direction of the Registry. The Operations Team are responsible for the maintenance and management of the Registry and are centralised in Melbourne, Australia.
The Registry is free to join, and membership is available to all practicing neurologists and their healthcare teams.
The first online global MS registry.
Serono popularised the use of the MS specific e-record, iMed, starting in 2000. The idea grew that individual iMed records could be de-identified and accumulated using a web-based server and the MSBase registry was born. It was initially owned by the Serono Symposia Foundation and governed by an international steering committee.
In June 2004 the steering committee became known as the MSBase Scientific Advisory Board (SAB), an advisory board to the new independent owner of the MSBase registry, the MSBase Foundation Ltd (Foundation). The Foundation partnered initially with Serial SARL then Rodanotech SARL to provide sophisticated multi-functional web platforms that enabled the upload and aggregation of coded patient information from local medical records to the MSBase Registry platform. This partnership was highly successful and facilitated the collection of over 52,000 patient records.
Ethics and privacy
- Ethics approval or exemption is required
- Patient consent is required
In order to preserve patient confidentiality, all identifying information is removed from patient records before reaching the Registry. Patient records are assigned a 'globally unique identification number' (GUID) at the time data is uploaded from any participating Centre's local data collection software.