ERN-EYE (represented by Hôpitaux Universitaires de Strasbourg) will transform the current Rare Eye Disease (RED) landscape in Europe, which consists of >24000 patients treated in our centres, suffering from >1000 ophthalmologic conditions, by developing an interoperable, sustainable and high-quality core patient registry for RED (i.e. REDgistry). With REDgistry, we will tackle the issues that impair the currently operational RED registries in the 13 ERN-EYE countries: lack of shared standards, absence of cross-registry interoperability, instable funding, legal uncertainty, inconsistent data quality, and absence of data sharing procedures.

Hence, we aim at i) creating a harmonised high-quality GDPR-compliant registry developed in accordance to the FAIR principles (i.e. Findable, Accessible, Interoperable and Reusable), ii) entering the ad hoc cases while controlling and evaluating the data, iii) ensuring its long-term sustainability, iv) engaging the key REDgistry stakeholders. These objectives will be achieved by 1) establishing a sound governance and long-term sustainability strategy, 2) developing and implementing the IT platform, and 3) entering, cleaning and evaluating the data.
REDgistry will enable the performance of epidemiology studies on RED, improve identification of currently undiagnosed RED patients, increase patient access to novel treatments and clinical trials, and enhance RED research capabilities through international cooperation, knowledge sharing and the future development of interoperable disease-specific registries. The final outputs of the REDgistry project will be an operational basic registry with a common dataset enrolled in the European Rare Disease Registry Infrastructure, a specific ophthalmic dataset, an established governance structure for the registry, a report on the preliminary epidemiology of RED in Europe, a dissemination & communication plan to raise awareness of REDgistry, and a sound economic plan to ensure its sustainability.
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Disease of the cornea (the transparent layer covering the front of the eye) is the second cause of blindness worldwide. The cornea is the most transplanted tissue with over 100,000 corneas transplanted annually. In Europe an estimated 30,000 corneal transplants are performed each year.
Currently there is no harmonisation of information across the European Union on the numbers or origins of the scarce corneas tissue available for transplant, the optimum procedure for transplant and the visual outcome and quality of life of corneal transplant patients.
The ESCRS in 2006 with the support of the Executive Agency for Health and Consumers pioneered an online Quality Registry of the outcomes of cataract and refractive surgeries (EUREQUO). ESCRS continues to support this Registry and has currently a database of over 2,000,000 surgeries.
ESCRS proposes to extend this platform to create a registry of corneal transplantation surgeries in Europe. The European Cornea and Cell Transplantation Network (ECCTR) will link three existing registries and recruit additional centres of excellence and eye banks to contribute data on availability of corneal tissue, methods of transplantation, and visual outcomes of surgery.
The focus of our consortium is on bringing added value and making a positive impact on one of the priority actions set out in the annual Work Programme for 2015; contributing to the fourth overall objective:” To build a common assessment methodology to allow academics, health professionals and authorities to assess and verify safety, quality and efficacy of (new) transplantation therapies and/or other types of clinical applications of human tissues and cells (e.g. assisted reproductive technologies).”
After the completion of this action the ECCTR will have all the data necessary to develop European Guidelines for Corneal Transplant Surgery to better utilise scarce cornea tissue ensure European self-sufficiency and reduce patient waiting lists.
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Within our EPICARE network, we want to build a useful registry for all patients with rare and complex epilepsies. This registry will contain the common data elements, as proposed by EU RD platform, as well as key epilepsy data fields such as etiology and treatment modalities. The existing pilot version of our registry will be updated and put an a REDcap platform. Pseudonymisation will be done with the EUPID tool and data fields will be FAIRified, so that interoperability with other registries and database will be possible. Links with Orphanet, WHO and genetic databases will be installed. After a pilot trial, the registry will be rolled out in all EPICARE centers. In a next phase, collaborations with other partners such as RD NEXUS and patient organisations (EPAG) will be established so that the EPICARE registry will become a pivotal element in all EPICARE activities. The EPICARE registry, as well as the links with other ERN and non-ERN registries and databases, will allow us to identify where in Europe the patients are located with rare and complex epilepsies and will make dedicated research, optimisation of diagnosis and treatment possible.
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This project proposal concerns the registry needs of VASCERN, the ERN on rare multystemic vascular diseases, which was launched in March 2017 and which is a 5 years project co-funded by the 3rd Health Programme under a Framework Partnership Agreement.

In our VASCERN registries' project, we will:
• Use the JRC / ERDRI for storing metadata / EU Common dataset and start transforming the registries into FAIR registries
• Adapt the plan to the structure of VASCERN which is unique because of many diseases with no relations between them (no common point between PPL and HTAD except that these diseases are vascular diseases): therefore there is a need for different registries:

1) common data registry: minimum EU dataset. Already available will be the core of each registry of each of our 5 Rare Disease Working Groups (RDWG).
2) Diseases specific registries: one per RDWG (meaning 5). These rare diseases specific registries can be based on the more complete and evaluated registry (HTAD, MSA and HHT) or can be the creation of a new registry (VASCA and PPL)
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ENROL, the European Rare Blood Disorders Platform, has been conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on rare hematological disorders (RHDs). ENROL aims at avoiding fragmentation of data by promoting the standards for patient registries’ interoperability released by the EU RD platform. ENROL’s principle is to maximize public benefit from data on RHDs opened-up through the platform with the only restriction needed to guarantee patient rights and confidentiality, in agreement with EU regulations for cross-border sharing of personal data.
Accordingly, ENROL will map at the EU level demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations and treatments in order to obtain epidemiological figures and identify trial cohorts for basic and clinical research. To this aim, ENROL will connect and facilitate upgrading of existing RHD registries, while promoting the building of new ones when / where lacking. Target-driven actions will be carried-out in collaboration with EURORDIS for educating patients and families about the benefits of enrolment in such registries, including different cultural and linguistic strategies.
The standardised collection and monitoring of disease specific health care outcomes through the ENROL user-friendly platform will determine how specialised care is delivered, where are the gaps in diagnosis, care or treatment and where best to allocate financial, technical or human resources. Moreover, it will allow promoting research especially for those issues that remain unanswered or sub optimally addressed by the scientific community; furthermore, it will allow promoting clinical trials for new drugs. ENROL will enable the generation of evidence for better healthcare for RHD patients in EU as ultimate goal.
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