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Research


Research is an objective of the Myositis Support Group and through fundraising and donations we are able to help. Over the years we have helped fund several research projects and assisted in others.

These have included treatment/therapy trials, specific scientific equipment, collaborative group meetings, and salaries to Myositis investigators. Where we have funded or part-funded a salary the person has held the post in memory of Dr Christine Saunders.

Myositis research is being undertaken across the United Kingdom, Europe and America with much excitement and enthusiasm. The rareness of the diseases makes qualitative research at a single centre and even in a single country difficult. It is through global collaborations and international working groups that promising research is being performed. The Myositis Support Group keenly supports and promotes this work.

The cost of large scale research currently exceeds our funding capacity but the charity would embrace the opportunity to do so. However, the money we raise is spent with the philosophy to fund pilot projects to tempt larger organisations to carry forward the work. This approach has been fruitful on several occasions.

Research supported by the Myositis Support Group has been helped by legacies but we would not have been able to sustain our financial help to this work without continuous donations and fundraising. To date we have raised over £500,000 and it is thanks to our supporters that we can look forward to assisting more doctors with their research into Myositis.

Doctors & Researchers Helped by the Myositis Support Group

» How to Participate in Research?
» Further Research Studies
 
Professor David Isenberg & Dr Shabina Sultan
Rheumatologists University College London

Research Area: Adult Dermatomyositis & Polymyositis

Myositis Support Group has funded:

  • Assessment of the effects Myositis on quality of life.
  • Salary for Dr Sultan to study the long term outcomes of Myositis
  • First two United Kingdom IMACS meetings to develop international criteria to diagnose and treat Myositis.
  • Assessment of the IMACS tools to diagnose and treat Myositis in patients
  • Computerisation of the IMACS tools for use in clinical trials
» Medical Publications by David Isenberg and Shabina Sultan
» Website related to some of this work
» Newsletter Articles of this work


"It is a realistic goal that reliable and validated indices for assessing the degree of disease activity and damage in patients with Myositis will have been devised and shown to be reliable valid tools. This will truly be a major leap in our attempts to improve serious inflammatory muscle disease. The Myositis Support Group has been invaluable in funding 'live patient' studies to try out these indices”
Professor David Isenberg, ARC Diamond Jubilee Professor of Rheumatology, University College London and IMACs coordinator

"Hopefully we will soon know whether the tools (IMACS indices) are the 'business' or not. If they are it is once again down to the Myositis Support Group who have funded the necessary international meetings and Dr Shabina Sultan”
Dr Robert Cooper, Consultant and Honorary Senior Lecturer in Rheumatology, Manchester University

 
 

The Myositis Support Group has made a Fundraising Promise commissioned by the Fundraising Standards Board to ensure its fundraising activities are open and fair.
 
 
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