There is increasing interest in using genetic data in conjunction with health records to open up new possibilities for research. We are working on a proof of concept project addressing the practical issues in combining genetic data with routinely collected healthcare records in a data safe haven. We are linking VCF files from whole exome sequencing data from consented individuals within the Swansea Neurology Biobanks with data in the Secure Anonymised Information Linkage (SAIL) databank at Swansea University.
We’re developing reproducible mechanisms to act as pathfinders for others seeking to do similar work. In our initial exploratory analysis, we are analysing the effect of genetic variants on real-world outcomes for people with epilepsy, such as hospital admissions and multiple medications. As we progress with the work, we will be happy to share our experiences of linking genetic data with other healthcare datasets and would welcome discussions for further collaborative work in this area.
The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.
The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.
The technical storage or access that is used exclusively for statistical purposes.The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.
The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.