Although the COVID emergency has hindered the normal conduct of activities during 2020, the Consortium has worked hard to implement the PARTNER registry.
Bimonthly meetings were organised and even though these meetings took place virtually, participants displayed the usual motivation, dedication, and collaboration.
These meetings were moderated by the Project Coordinator, Prof. Gianni Bisogno, and discussions focused on the progress of the project, the next steps and how to remain aligned with the evolving European registry.
Specific meeting topics focused on:
- List of VRT and Data dictionary: The participants analysed the list of Very Rare Tumours (VRT) to be included in the Data Dictionary and selected the people involved in the elaboration of variables for some specific tumours.
- European Standard Clinical Practice (ESCP) project: Decision taken to have two ESCP-related (European Standard Clinical Practice) presentations: PARTNER registry project and EXPeRT (European Cooperative Study Group on Paediatric Rare Tumours) Group - ESCP development.
- REVAMP the EXPeRT/PARTNER website: Implementation of the website revamp according to SIOPE's proposal. The final structure of the website will be considered and approved, and the responsible people will provide final suggestions and decisions. Monthly meetings will be held to implement the main contents of the website.
- Quality control, budget monitoring and risks management: The Project Coordinator, WP Leaders and the main representative of Collaborating Stakeholders, Dr. Andrea Ferrari, checked the progress of the project and assured the quality of its outputs:
- Reviewing procedures in order to monitor its progress and the achievement of the project goals
- Putting in place risk management
- Monitoring procedures for delivering high-quality results
- Providing consortium with guidance for project reporting
- Providing consortium with guidance on communication, exchange of data, publication, and dissemination
- Simplifying decision making with light and fundamental changes in the project
- Identifying strengths, weaknesses, and obstacles to progress
The PARTNER Project would like to invite those that are experts in the field and interested in participating as a stakeholder in this project to please send an email to: expert.raretumors@gmail.com
More information: www.raretumors-children.eu
Twitter: #PARTNERproject
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This Newsletter is part of the project / joint action ‘777336 / PARTNER’, which has received funding from the European Union’s Health Programme (2014-2020).
Its content represents the views of the author only and is its sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.