For Researchers

We are always delighted to hear from clinicians or researchers interested in CASK gene disorders. Please get in touch.

We urgently need more research into CASK gene disorders

Hope for CASK

The CASK community have their very own patient registry!

CASK gene registry

We have made it easy for scientists to research CASK disorders because our community are registered with RARE-X, an accessible data collection programme. As well as demographic data, caregivers have completed numerous detailed surveys on related conditions including epilepsy and sleep. More information for researchers can be found here. Sign up to kick-start your CASK journey.

New for 2023

Data from the CASK community is being used in the Xcelerate RARE: A Rare Disease Open Science Data Challenge. See our registry page to learn more.

What we fund

We fund ground-breaking research to improve the lives of people with CASK gene related conditions and to understand more about this critical gene.

This is led by our research strategy, with the most promising projects selected using rigorous peer review by our Research Review Committee.

We are open to considering collaborations with international institutions. Where no funding is available we will work with the institutions to apply for grants from external sources.

Applying for grants to research CASK gene disorders

New projects will be assessed against our project selection criteria to ensure we focus on activities that make the best use of our funds. All new projects must fall within the scope of our purpose and must pass an internal triage before progressing through the stages listed below. We follow the recommendations of the AMRC (Association of Medical Research Charities). Our research strategy is led by international professionals, key opinion leaders working in the field and those personally affected by CASK gene related disorders. All grant applications must match at least one of the criteria.

Peer review process

We award our funds through a peer review process since this is recognised as best practice in awarding research grants, with each application requiring over £20,000 of funding subject to review by independent experts in the field.

Useful publications on the CASK gene

Research on CASK is international and growing. We aim to keep our website up to date with the latest research, learnings and news  from the scientific world of CASK gene disorders. Please click here to find out more.