MSBase Registry

• Research type

  Research Study

• Full title

  MSBase Registry Global Cohort Study of Multiple Sclerosis (MS) and other Neuroimmunological Diseases (NIDs)

• IRAS ID

  286711

• Contact name

  Orla Gray

• Contact email

  Orla.Gray@setrust.hscni.net

• Sponsor organisation

  MSBase Foundation Ltd

• Duration of Study in the UK

  29 years, 11 months, 31 days

• Research summary

  The MSBase Registry is a longitudinal, observational Multiple Sclerosis database open to all practicing Neurologists and their team, worldwide. In collaboration with participating Neurologists, the MSBase Registry has established a unique, web-based platform dedicated to sharing, tracking and evaluating outcomes data in Multiple Sclerosis (MS) and other Central Nervous System (CNS) demyelinating diseases.
  In particular, MSBase aims to advance multi-centre, multi-national epidemiological and outcomes research by providing a freely accessible resource to compile, combine,
  compare and analyse large datasets.
  The Principal Investigators (Neurologists) at participating centres submit coded clinical information using compatible data collection software. To date,the most commonly used software is the freely available iMed software. MSBase has recently developed it own electronic data entry software, MDS. Data can be collected using either iMed or MDS. The data to be collected comprises key parameters relating to demographic data, diagnosis, serial neurological examinations (Kurtzke Functional Systems Score and Expanded Disability Status Score, EDSS), relapse information, specific safety related data and treatment exposures. All aspects of patient management are entirely at the discretion of the site's managing neurologist and the patient.

  The MSBase Scientific Leadership Group (SLG) acts as the Scientific Advisory Board to the MSBase Foundation Ltd. The SLG has been delegated the role of custodian of the composite data, while individual datasets (which contain identifiable data) at all times remain the property of the participating centre, under management of
  the Principal Investigator (PI). The MSBase SLG will ensure data integrity and monitor all MSBase activities including core study designs, promotion and implementation, and perform composite data analyses.

• REC name

  Yorkshire & The Humber - South Yorkshire Research Ethics Committee

• REC reference

  20/YH/0344

• Date of REC Opinion

  15 Dec 2020

• REC opinion

  Favourable Opinion