WP4, Mapping and Analyzing Existing Registries,
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The main objective of the WP4 workshop was to familiarize registry holders and other participants with the RoR environment, their role in it and its use as a tool for efficient registry governance. More specifically the workshop had the following objectives:
1. Familiarizing the participants with the RoR as a registry information tool (registry ‘yellow pages’) in which the user can BROWSE, SEARCH and COMPARE various EU Member States registries.
2. Sketching outlines of the PARENT Framework and RoR 2.0.
3. Introducing participants to the design idea behind the RoR 2.0 (the RoR as a paradigm for a stakeholder community networking framework for registry assessment, comparison, standardization, support, collaboration, interoperability and integration) as well as getting feedback on the participants’ impressions and understandings of the concept to be taken into account as future reference for the framework development.
4. Outlining the idea of a Registry Assessment Tool on the EU level (as this is one of the top priority functionalities envisioned for the PARENT RoR) that will support registries’ comparison, evaluation and standardization.
5. Registry comparison and assessment use cases and criteria review, focusing on collaboration and stakeholder participation.
WP5, Methodological and Governance Guidelines for Member States,
The WP5 workshop was divided into two parts, and began with introducing the structure of the forthcoming PARENT “toolkit” for patient registries, which will be the Methodological guidelines and recommendations for efficient and rationale governance of cross-border patient registries.
The aim of the first part of the workshop was to collect participants’ opinions and comments about the toolkit proposed structure, the scope of the chapters, the contents that will compose the final document, approaches to quality assurance, suggestions on the tools and other remarks.
An important topic of discussion was the choice of the definition of registry, to which the guide will adjust its criteria.
A general agreement was the convenience of not forgetting important points in the guidelines, such as: security, storage, separating sensitive data from other data, policy on access rights and sustainable maintenance.
The second part of the workshop was also important for PARENT Work Package 5 activities. It was devoted to the discussion of a PARENT Framework use case (i.e. building a new registry), which is highly connected with the activity and development of the Methodological guidelines and recommendations for efficient and rationale governance of cross-border patient registries.
Very relevant comments were gathered about the overall process, how to plan a new registry, the content design and data elements of a registry, the registry data model phase, the design of a process model, the data sources for registries, the set-up phase, how to run a registry, collection, linkage, controlling, cleaning, storing, analysing data as well as data dissemination and changing or stopping a registry.