Rowling CARE

• Research type

  Research Database

• IRAS ID

  200777

• Contact name

  Siddharthan Chandran

• Contact email

  siddharthan.chandran@ed.ac.uk

• Research summary

  Rowling Clinical, Audit, Research and Evaluation (CARE)

• REC name

  Scotland A: Adults with Incapacity only

• REC reference

  16/SS/0156

• Date of REC Opinion

  26 Jan 2017

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Rowling CARE is an audit and research registry which holds participant contact details along with routinely collected neurological data including information on condition, onset, diagnosis date, treatment and interventions.
  Rowling CARE aims to improve care through audit and enables participants to consent( or not ) to re contact for future research studies and/or participate in the design of research studies/ focus/consultation groups.

  At the Anne Rowling Clinic we believe that care and research are inextricably linked. We aim to improve patient care and management through research.
  The establishment of Rowling CARE will start the process of developing an overarching platform with central governance for the current databases. In the future this will include the Edinburgh Cognitive disorders Clinic
  Diagnosis, Audit, Research and Treatment (DART) registry IRAS: 103819, Rec ref: 12/SS/0196. The Scottish MND Register V3 IRAS: 194611, Rec ref: 15/SS/0216. IMED ( MS registry currently used as an audit tool). As well as bringing together these registries under one governance umbrella the database will hold the names of people who have previously consented to re-contact should another study of potential interest arise. Having one database collecting the data across the neurological conditions of those attending the Rowling Clinic allows audit and increases equity of access to research studies. The development of one overarching registry will
  bring the governance of the existing registries together ensuring standardised oversight, maintenance and reporting as well as allowing equity of access to research or design of research projects independent of condition

• Research programme

  Rowling CARE encompasses all those with a neurological disorder attending the Anne Rowling Regenerative Neurology Clinic. Once the SMART MND registry is brought under the Rowling CARE governance umbrella this national registry will also be included.

• Research database title

  Rowling Clinical, Audit, Research and Evaluation (CARE)

• Establishment organisation

  University of Edinburgh

• Establishment organisation address

  CCBS, Chancellor's Building

  49 Little France Crescent

  Edinburgh

  EH16 4SB