Research

Clinical Scientific Advisory Committee (CSAC)

Our Clinical Scientific Advisory Committee (CSAC) consists of members of our Board of Trustees and the Society’s Patient Advocacy team. These members come from medical, healthcare or research backgrounds from a broad range of disciplines and perspectives who will consider research applications each year.

 

All proposals will be subject to a review process to ensure they meet our high standard of quality. The committee will make an informed recommendation to our Board of Trustees who hold the final decision on how we allocate research funds. We will invite applications up to £100,000 per year (we anticipate funding 1-2 projects per year with a total value around £100K). More information on how to apply will be announced soon. 

 

The following criteria for allocating research funds has been outlined:

 

  • Research that has practical benefit for patients

  • Seed funding/start up grants

  • The MPS society will consider grants from any country, ideally some part of a collaboration with a UK institution

  • Individuals who will train and work in the UK for the future benefit of the UK MPS/LSD and metabolic community

  • Key specialist centres in the UK

  • We will consider applications across the breadth of metabolic medicine, but of course will focus on MPS and related disorders.

 

Conflicts of interest


Both the Clinical And Scientific Advisory Committee and any external reviewers are asked to declare any conflicts of interest. Those with conflicts are not permitted to discuss or provide comment on those applications.

Current funded research 
 

In January 2020, The MPS Society awarded a grant to Professor Simon Heales of Great Ormond Street Hospital, London to employ a scientist for one year to evaluate a new piece of equipment that could significantly  improve our ability to identify patients with lysosomal disorders such a  MPS I, Pompe, Fabry and Gaucher Disease. The new technology, known as Digital Microfluidics, will be thoroughly tested by the Enzyme Laboratory at Great Ormond Street Hospital.  Key aims of this study will be to document how robust and reliable the equipment is and how well it copes with large numbers of samples.  At the end of the study a recommendation will be made as to whether Digital Microfluidics  is a suitable technique that could be used for incorporation into a newborn screening programme and/or routine diagnostics.

For more information

For any questions, details of our T&Cs or to receive details on how to apply please contact the communications team by email or phone 0345 389 9901

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society, MPS House,

Repton Place, White Lion Road,

Amersham, Buckinghamshire,

HP7 9LP, United Kingdom

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