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Newsletter June 2019

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First ERNs Newsletter

The ERN newsletter aims to inform the ERN community and interested external stakeholders on the last developments of the ERNs ecosystem, and is expected to be released around three times a year. The “good practices” where ERNs members and Member States are invited to send contribution ahead on initiatives, products or activities they are currently undertaking in the context of the ERNs and which might be of interest or inspiration for other members of the community. The idea is to promote cross-ERNs or cross-Member States ideas and experiences.
Check the ERNs Newsletter

Preparedness actions UK withdrawal

The 8th ERN Coordinators Group Meeting took place on June 24th in Brussels. TransplantChild attended this event, where the European Commission presented updated information about the impact of BREXIT on access to IT tools and CPMS.
Access the full presentation

National Donor Day in Spain

On June 5th, on the score of the National Donor Day, this association organized a march with approximately 60 participants that had received any type of transplants. The objective was meeting more transplanted patients to share their experiences regardin the process of donation and transplantation.Madrid Sport & Transplant Association is a non-profit organization that aims to concern society about the importance of organ, bone marrow and blood donation, besides promoting health and sports in those people who need to be transplanted.

ERN Activities

JRC course on European Rare Disease Registry Infrastructure (ERDRI)

TransplantChild attended the JRC course on June 25th in Ispra, Italy. The attendees received training about the ERDRI platform and how to establish the metadata structure for European rare disease registries.

Access the ERDRI Platform

Helpdesk support On-site training in March 2019

This month we would like to extend our thanks to Dr. Kalicinski and members of Children's Memorial Health Institute in Warsaw, Poland for their collaboration and contribution during the training of the platforms available for virtual consultation and collaboration among Europe.


All Working Groups Local Meeting in La Paz University Hospital

TransplantChild organized a local meeting in La Paz University Hospital. The topics addressed were the three key items of the network for this year: the virtual consultation platform CPMS, the registry proposal and the Clinical Practice Guidelines (CPG). The aim was to obtain collaboration for the development of these crucial tasks.

Available Webinars

Healthcare working group
04 04 2019 - "CPMS TransplantChild activity"

24 01 2019 - “Results of European Paediatric
                      transplantation Map"

15 11 2018 -  “PTLD Audit Results”
Clinical practice guidelines working group
06 06 2019 - "Conflict of Interest"

25 04 2019 - "How to use COVIDENCE to screen the
                      records for the CPG"

04 04 2019 - "Critical appraisal of Clinical Practice

21 03 2019 - "Key issues"

07 02 2019 - "Training programme"

08 11 2018 - “CPG Development on
                      Immunosuppressive strategies in
                      paediatric transplantation”
Research working group
07 03 2019 - “Promoted research: pitfalls and
                      opportunities in the whole European
                      research scenario”

18 10 2018 - “DG Sante-promoted mapping of
                      Research Capabilities of ERNs.
                      TransplantChild situation”
Education and Training working group
24 04 2019 - "Action and annual plan"

15 02 2019 - "How to design EaT activities from a
                      transversal approach, Hospital La Paz

05 12 2018 - “Education and Training gaps, results
                      from TransplantChild physician and
                      nurses survey”
Networking & Knowledge working group
13 06 2019 - "Human capital"

22 03 2019 - "Knowledge sharing"

19 12 2018 - “Critical Knowledge”
Quality and Safety
11 04 2019 - "Perceived quality by patients, families
                      and relatives"

17 01 2019 - "Indicators and evaluation criteria for

11 10 2018 - “Quality and safety Survey”
ERN IT platforms and registry pills
27 06 2019 - "TransplantChild registry proposal"

20 06 2019 - "ERN Collaborative Platform (ECP)"

25 04 2019 - "CPMS new features and activity report"

01 11 2018 - "Overview CPMS and Virtual

Research funding pills
05 06 2019 - Next Research European Calls

03 01 2019 - Research funding office pills

13 09 2018 - Next Research European Calls

Show full Webinar Calendar 2018-2019
Upcoming Events

Next Webinars 



(4pm CET)


Aug 07

CPG WG meeting: “Screening by full text”

Aug 14

Research funding office pills: “Horizon 2020 calls”

Aug 22

ERN IT platforms and registry pills: “Draft proposal for New call”

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