Scientific advisors

Our scientific advisors help to ensure that only the highest quality, peer-reviewed research is funded and that it serves the best interests of both patients and scientists. We will only support research that has the potential to bring us closer to treatments or a cure for CASK gene-related disorders. Our process of peer review is internationally recognised as best practice for ensuring that our funds are used wisely and effectively.

Independent researchers are able to be on our scientific advisory board (SAB), however they must not be beneficiaries for any funding round they are involved in. Any conflicts of interest must be declared. Our Conflicts of Interest Policy is available here.

Our advisory board are all volunteers and do not receive any payment for their services, however reasonable expenses for travel and accommodation are provided where necessary. We are very grateful for their generous donation of time and expertise.

When necessary, we recruit external reviewers with expertise in the required fields to peer review our proposals.

CASK Research UK’s Annual Review Process

Every year the beneficiaries of our research grants are asked to complete a report designed to answer the following important questions.

  • Are supporters’ donations being used in the most effective way possible, to bring us closer to finding treatments for CASK gene-related disorders?
  • Does the research offer good value for money?
  • Is the research progressing according to plan?
  • Does their research remain relevant and valuable in the light of any new discoveries from around the globe?
  • Does the research complement and not duplicate other research?
  • Has the beneficiary achieved meaningful outputs, outcomes and achievements from the research programme that are reasonable for the level of grant funding and within a single year time frame?
  • Are key performance indicators set the previous year being achieved?
  • Is the institute of the researcher(s) producing an appropriate number of papers, and are they being published in high quality, peer reviewed publications with a high impact factor?

Their completed reports are then sent out to the members of the RRC who review them using both qualitative and quantitative methods: in other words, they offer comments, and scores on a scale of 1 to 5, in each category.

The reports are then discussed in a virtual chat between the researchers and selected members of the RRC. This ensures that questions arising from the reports can be clarified and fed back to the RRC. The RRC will then make their recommendations to the Board of Trustees.

Other roles of the SAB

In addition to the above, the SAB may sometimes be required to complete other tasks.

  • Assist the charity’s Board of Trustees in monitoring the research strategy and assessing effectiveness and impact of the charity’s research spend
  • Assist the charity in exploring opportunities for leverage of research funds and for developing research partnerships
  • Advise the charity’s Board of Trustees on the best mechanisms to achieve the research objectives
  • Provide ongoing advice to the CASK Research UK team and ‘expert’ quotes and support with raising awareness through the media