People with MS who are treated at one of our NHS partner sites can give their consent for their medical information to be securely transmitted to the Register. Their clinical details can be ‘linked’ to questionnaire results.
Data linkage is the merging of two or more separate data sets (e.g. outpatient information and questionnaire responses about the same person) for research purposes. This linked data creates an extremely rich source of information that can be used by researchers to help make sense of MS. For a list of our current partner sites, please see the map.
The MS Register clinical consent pack can also be downloaded here. If you would like a hard copy, please get in touch.
The MS Register is open to any NHS hospitals (we are an NIHR study) who would like to get involved. After an initial site scoping process, sites are provided with all the documents and over the phone/onsite training.
If you are an NHS Hospital or Trust and are interested in working with us please contact us or complete our scoping form so that we can find out a little more about your site.
Staff approach any of their patients in person or by post, who are over 18 and have a confirmed diagnosis of MS.
The patient is given the A5 consent pack and if they would like to consent to have their medical records linked with the Register.
Informed consent is taken and the minimum data set (MDS) pro forma is completed. The data items on the MDS have been decided by the MS Register clinical advisory group as the most important information that should be collected in MS treatment centres across the UK.
The MS Register recognizes that data capture can be fundamentally challenging for hard pressed NHS Staff.
While the Register has a very simple eCRF available for use, we are system agnostic – data can be securely extracted from many existing record systems in use (for example iMed, MS Excel and others). Patients are then encouraged to log onto the website and complete questionnaires. Every month the MS Register uploads consented patients to the CRN and sites are attributed with the patients they have consented to the study.
The UK MS Register works with a growing number of NHS sites across the UK and is an NIHR portfolio study (10416). The Register has been approved by the South West Central Bristol National Research Ethics Service: 16/SW/0194.