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The ERN-RND Rare Neurological Disease Registry [ERN-RND Registry] [947588] - Project
Coordination of the project by lead UKT

Start month:1 - End month: 36

T1. Coordinate and monitor the overall project progress. The task comprises the development and implementation of management procedures for the coordination of the project. The work comprises the esta...
T1. Coordinate and monitor the overall project progress. The task comprises the development and implementation of management procedures for the coordination of the project. The work comprises the establishment of the project management manual giving the main decision-making rules and the main procedures for a good operation of the project. UK-TÜ will carry out the daily management of the project. Furthermore, the task comprises the management, technical and financial reporting of the project’s advancement.
T2. Communicate to ERN-RND partners. An external-facing website and internal intranet will be developed and linked with the ERN-RND web-site to ensure visibility and impact of the project. Furthermore, the communication infrastructure of ERN-RND will be used.
T3. Management of the funding. UK-TÜ will be managing the funding of the project. One main subtask will be to prepare the subcontracts with the ERN-RND centres.
Dissemination by lead UKT

Start month:1 - End month: 36

T1 Develop dissemination plan. A dissemination plan that takes into account dissemination target groups, objectives, channels and time lines will be developed.
T2 Implement the dissemination plan towa...
T1 Develop dissemination plan. A dissemination plan that takes into account dissemination target groups, objectives, channels and time lines will be developed.
T2 Implement the dissemination plan towards ERN-RND. We will carry out the target group and channel specific dissemination activities as planned in the dissemination plan.
T3 Implement the dissemination plan towards external stakeholders. We will carry out the target group and channel specific dissemination activities as planned in the dissemination plan.
Evaluation by lead UKT

Start month:1 - End month: 36

T1 Evaluation of the deliverables and milestones, indicators as well as output and impact.
Evaluation will be done by every six month through monitoring deliverables and milestones and indicators. Thi...
T1 Evaluation of the deliverables and milestones, indicators as well as output and impact.
Evaluation will be done by every six month through monitoring deliverables and milestones and indicators. This will be done by using an update report by the project manager in the first instance and then a joint assessment exercise with the project coordinator.
ERN-RND Core Registry by lead UKT

Start month:1 - End month: 36

T1 Registry Development: The ERN-RND Registry will be developed using the RedCap database platform that is being operated at University Hospital Tübingen, Hertie Institute for Clinical Brain Research...
T1 Registry Development: The ERN-RND Registry will be developed using the RedCap database platform that is being operated at University Hospital Tübingen, Hertie Institute for Clinical Brain Research.
T2 Pilot Testing: After programming, the registry will undergo a 3-month phase of intense iterative pilot testing. At least 6 clinicians at 3 ERN-RND HCPs will be asked to serve as test users by submitting data and improvements will be implemented according to the experience collected thereby.
T3 Implementing Quality Assurance Measures: Data plausibility checks will be implemented.
T4 Assuring data Privacy and Protection: All patient data will be stored in a pseudonymised fashion. Patient data will not be collected on individual basis but through a secure bulk upload procedure on an annual basis. Each HCP sends the collected data as an encrypted CSV-file to the UK TÜ cloud. Access to the data base will be provided to all HCPs contributing to the registry. To this end an encrypted file with the full data set of the ERN-RND registry will be deposited at the UK-TÜ cloud. Access to this encrypted file will be restricted to HCPs that successfully uploaded their data for the respective year and solved all queries of the plausibility check.
T5 Documentation: A Registry Manual will be produced.
Integration with existing disease-specific registries/data bases by lead UKT

Start month:4 - End month: 36

T1 Linking the central ERN-RND registry with existing hospital databases and disease- or treatment-specific registries: We have already been collecting information from the ERN-RND centres’ hospital...
T1 Linking the central ERN-RND registry with existing hospital databases and disease- or treatment-specific registries: We have already been collecting information from the ERN-RND centres’ hospital information systems on the availability and extractability of the required data. Based on this information we will role out the registry in the ERN-RND centres through a staged process. Variable mapping will be performed and a data transmission manual will be created for each centre. The data transmission manual will be the basis for data completeness and consistency checks of the data exports
T2 Meeting regulatory requirements: The regulatory requirements for data transmission to the ERN-RND Registry will be assessed by review of the centres informed consent documents and ethics committee approvals. Wherever necessary, amendments to informed consent documents will be obtained.
T3 Data collection: based on the data submission readiness of the ERN-RND centres we will collect data from the ERN-RND centres
Network-wide performance and outcome monitoring by lead UKT

Start month:13 - End month: 36

T1: Identification of key performance and outcome indicators. The ERN-RND diasease groups will revisit the issue of key Quality and Outcome Indicators
T2 Inclusion of identified Key Indicators in the ...
T1: Identification of key performance and outcome indicators. The ERN-RND diasease groups will revisit the issue of key Quality and Outcome Indicators
T2 Inclusion of identified Key Indicators in the registry database: a statistics and benchmarking module will be programmed. For example the rate of undiagnosed patients per disease group will be used as an indicator. Statistics will be provided not only for an individual center but also for all patients within each disease group category.
T3 Analysis of key performance and outcome indicators: analysis will be done annually.
Details
Start date: 01/04/2020
End date: 31/03/2023
Duration: 36 month(s)
Current status: Ongoing
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 400 000,00