We are a team of researchers based at Newcastle University. We are using different techniques to understand ichthyoses from the laboratory to ‘big-data’. One area we think is really important to develop is the who, the what and the how. Who is affected by an ichthyosis, what ichthyosis are they affected by and how are they affected?

What is so exciting is that, for the first time, we will be looking at national data for patients living with ichthyoses across England. Whilst there have been prior efforts to create regional databases of ichthyoses, partnership with the National Disease Registration Service will allow research to be performed at a national scale. Data held by NHS England is subject to very strict governance and is closely guarded.

Thanks to the generous support from the Ichthyosis Support Group, we have been able to pursue this important project.

We hope this research will allow a better understanding of how many people are affected by different types of ichthyoses across England. We plan to gain insight into the  impact of ichthyoses on these people and the health service. We can also gain insights into how many patients have received genetic testing.  We hope that this information will aid lobbying for ichthyoses clinical services and provide future research opportunities.

Professor Neil Rajan, Dr Mark Eisner, Dr Zoe Venables