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Recent Developments

 

Report: EB registry meeting Dublin, June 2016

 

Prior to this meeting DEBRA Ireland prepared a booklet which summarises the current efforts and projects concerning patient registries in general and specifically for EB and other rare diseases.
Download the EB registry meeting summary (PDF)
Download the information booklet about existing EB registry efforts (PDF)


Text: Dr. Avril Kennan
Patient registries for EB hold enormous potential for improving care. While there are many different approaches to EB registries and many EB registries in existence, the challenge has always been to coordinate efforts, to the extent that sharing of data becomes possible. Sharing of anonnymised patient data between EB centres of expertise across Europe will be invaluable in a myriad of ways, including in supporting recruitment for clinical trials, providing evidence for advocacy and facilitating research. International collaboration for that purpose has, so far, been challenged by issues relating to data protection, interoperability and funding. However, with progress in technology and with very welcome seed funding from the Irish Skin Foundation, we are now at a point where these issues are tangibly surmountable.

Working closely with the Irish Skin Foundation, DEBRA International, EB-CLINET and the eHealth group of the proposed European Reference Network for rare and undiagnosed skin diseases (ERN-Skin), DEBRA Ireland hosted a meeting in Dublin in early June to discuss the future of EB registries. Prof. Alan Irvine and Dr. Dmitri Wall of the Irish Skin Foundation have been developing ambitious plans for a number of dermatology patient registries, one of which will focus on EB, as a model for rare disease. The aim of the meeting was to bring together leaders from the European EB community and experts in patient registries, such as representatives of EPIRARE, PARENT and OpenEHR, to progress these plans and investigate the potential for collaboration.

Current best practice in governance, data protection, data ownership and interoperability were all addressed at the meeting. In order to ultimately share information, each centre involved needs to capture the same information on the most important patient details. To this end, a major purpose of the meeting was to agree on a minimum set of common data elements for the registry. There was agreement from all clinical centres in attendance to share details of what they currently capture information on and this information is now being used to shape a consensus core dataset. Very importantly, individual centres will also have the flexibility to capture additional information, should they require it for their clinical care or research needs.

The meeting was a great first step in what will be a long-term project. It will involve a series of steps that will build a governance structure and enable the growth of a network of registries that can communicate securely. It will embrace existing registries, while also offering a generic technical solution that will first be implemented in Ireland with funding from the Irish Skin Foundation and can then be adopted by other centres who wish to use it. Data will initially be collected locally and then anonymised and shared centrally. All the while, there will be a focus on how this initiative can support the ERN-Skin and on how to make the registry financially sustainable in the long term.

We are eager to be as inclusive as possible and welcome interest from any EB clinical centre that would like to get involved. Please get in touch if you would like to know more.