Research

The MPS Society has been funding cutting-edge research into MPS, Fabry and related diseases since its inception in 1982.

To this day, the MPS Society has spent over £12 million on research projects into these conditions, to find better treatments and care. Scientific breakthroughs and new technologies offer hope for diagnoses and treatments for those affected that was unimaginable a few years ago.

The sooner we can accelerate our research and take advantage of these opportunities, the quicker we can help even more people affected by MPS, Fabry or a related lysosomal disease.

Clinical Scientific Advisory Board (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. 

Applications for grants will be assessed on:

• The importance or burden of the health or care problem being studied

• What the proposed research adds to the existing body of knowledge

• The improvements in health and care this research is likely to lead to

• The potential impact of the research on patients, the public and people working in health and care

• Whether the cost of the research is reasonable and commensurate with the work involved

• The likelihood that the research design is feasible and deliverable and answers the proposed question

​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.

Relevant research

• Tracheal Resection for Critical Airway Obstruction in Morquio A Syndrome

• The importance of psychological support for parents and caregivers of children with a rare disease at diagnosis

• Barriers to Participation in Clinical Trials

• The importance of early diagnosis and views on newborn screening in metachromatic leukodystrophy: results of a Caregiver Survey in the UK and Republic of Ireland

Rare Disease Research Partners

RDRP support research and access to treatment for people living with rare conditions. 

Research grant application process

Applications for research grants are now open until 28 March

The MPS Society is open to applications for grants for scientific or clinical research into LSD or related conditions from Monday 8 January 2024. The deadline for applications is 28 March 2024. Following a review of its patient support, in this round of grants we are particularly interested in receiving applications that support and/or improve the psychological wellbeing of those impacted by LSD or related conditions or have a focus on newborn screening. While the MPS Society will accept applications from single centres or research units, we are specifically looking for applications from applicants collaborating with other centres or units in the field.

Can you join the peer review panel?

​We are committed to transparency and open access and applications will be sent out for peer-review. We would encourage all applicants, potential applicants or people with an interest to help us support impactful research by joining our peer review panel, if you are willing to spare a couple of hours reviewing an application please contact the peer review coordinator.