Our Research Review Committee helps 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.
Members of the committee include experts in scientific research publishing, doctors with an expertise in neurological disorders, experts in the pharmaceutical field and geneticists.
Independent researchers are able to be committee members, however they must not be beneficiaries for the funding round they are involved in. Any conflicts of interest must be declared. Our Conflicts of Interest Policy is available here.
RRC members 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.
CASK Research Foundation 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 Research Review Committee
In addition to the above, the RRC 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 Foundation team and ‘expert’ quotes and support with raising awareness through the media
Our Research Review Committee
Chair – Dr Lucy Robinson
Lucy obtained her D.Phil. in immunology of exotic viral infections from the University of Oxford, then completed her post-doctoral studies first in Singapore, and finally back in the UK. She founded Insight Editing London in 2009 based on her passion for enhancing the quality of published research across the biomedical sciences. She has a wide range of experience and keen eye for detail, developed over her 12 years of professional review of research proposals and manuscripts. She will bring these skills to bear in helping the charity ensure that the research they fund is based on a rigorous scientific rationale that ensures meaningful progress towards the charity’s aims.
Dr Jessica Tamanini
Jessica obtained her D.Phil. in neurobehavioural genetics and ophthalmology from the University of Oxford, under the guidance of Professor Russel Foster and Dr. Patrick Nolan at the Medical Research Council. Here, she focused on the genetic regulators of circadian rhythmicity, using the mouse as a model organism. Her work contributed to the identification of a novel transcription factor involved in mediating visual input, circadian rhythmicity and neuronal output, which was published in the highly acclaimed scientific journal Cell in 2015. She later moved into scientific publishing, working for organisations including the prestigious Nature Publishing Group. In 2018, Jessica joined Insight Editing London, where she reviews over one hundred research manuscripts and grant applications each year, giving her a great breadth of experience to bring to her role for this charity.
Isabel obtained her D.Phil from Imperial College London in Clinical Medicine Research, studying the potential of stem cells for aiding neural repair. She has an MSc in Neuroscience and has worked in the pharmaceutical industry on medicinal products for neurodegenerative diseases, as well as infectious disease and oncology. She has over 15 years experience in regulators affairs and product development and is currently Director Regulatory CMC at AstraZeneca. Isabel has worked on clinical development and obtaining commercial licenses for biologics, including gene and cell therapies, and orphan products for rare diseases. Her background allows her to assess the potential of proposed treatments becoming viable medicines.