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MS Registry in Ireland

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Monday October 23 2017 09:23 AM

Briefing Document and Position Paper on the need for an MS registry in Ireland

MS Ireland has produced a Briefing Document and Position Paper on the need to establish an MS Patient Registry in Ireland.

The paper outlines:

  • What patient registries are
  • Why registries are important
  • Current patient registries in Ireland
  • MS registries internationally
  • MS Ireland’s position and recommendations

The paper can be accessed here

This document has been prepared by Harriet Doig, Information, Advocacy & Research Officer, MS Ireland. Questions and comments can be directed to harrietd@ms-society.ie

Author: MS Ireland

Tags: ms, msregistry, ireland

Comments

Pat

Friday November 03 2017 15:57

Any registry brought together would have to ensure security for Patients who have identified themselves against possible lay off from their employments. This is a very real danger for People with MS especially with the liability for falls in the workplace. What I am saying clearly is that the registry can only be beneficial if there is a maximum disclosure by People. People who have been diagnosed with the illness will need some assurances to protect themselves as best they can.

Michael

Monday November 06 2017 10:57

Excellent proposal-long overdue.
The register is an effective way of planning for the future treatment of patients & those ms sufferers who work full time & their rights etc.
Mike Costello

Philip

Thursday January 04 2018 14:53

Excellent document - I work with Cystic Fibrosis Ireland and the existence of a Registry was a vital prior requisite for the adequate provision and planning of present and future CF services in Ireland. Further it created a more favourable environment to attract international research and clinical trials. I hope this important MS Ireland document results in a positive outcome. We badly need a national policy on patient registries.

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