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Newsletter April 2019

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The ERN Coordinators are getting ready for the challenges of enlarging the European Reference Networks

The ERN coordinators met in Brussels on the 25th March 2019 and addressed several key aspects of the networks' development. The main discussions focussed on the on-going designation by Member States of Affiliated partners, both from a procedural point of view and concerning the practical implication for the ERNs. Several topics were then addressed which are related to the growing operational activities and development of the networks: the use of the IT platforms (CPMS and ECP), the communication activities, the relations with industry, the monitoring, the research activities, education and training, and the support from different financial instruments.

The integration of the ERNs into the national health system is one of the current priorities, and the Working group on Integration was mandated to prepare a Board statement with recommendations to the Member States on ways to support the ERNs in their own country and integrate them within their national health system.
Read more about ERN Coordinators group

The ERN Board of Member States decided to pursue the consolidation of the ERNs 

A Statement of the Board of Member States will be prepared concerning the integration of the ERNs into the national healthcare systems, decided the representatives of Member States. They also discussed relevant aspects related to the strengthening and enlargement of the European Reference Networks and the relationship with industry . The Swedish board member was elected new co-chair for the upcoming two years.
More information about Member States meeting
ERN Activities

Dr. Paloma Jara received the Great Cross of the Community of Madrid

The Community of Madrid's government awarded a total of 31 health professionals in Madrid, corresponding to the two previous years. The objective of this honorific distinctions was appreciating their great contributions to the health system.
 
Dr. Paloma Jara, Coordinator of TransplantChild, was awarded with the highest distinction: the Great Cross. This was in part due to her excellent job coordinating our network.

Helpdesk support On-site training in April 2019

This month we would like to extend our thanks to members of ISMETT, in Palermo, for their collaboration and contribution during the training of the platforms available for virtual consultation and collaboration among Europe.

5th ITAG Meeting in Brussels

The IT Advisory Group of several ERNs attended this meeting. It consisted on presenting new modifications in the CPMS and discussing possible future additions and platform changes. Moreover, all the ERNs gave their feedback and experience regarding the use of the platform, with the aim of facilitating its improvement for the future.


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

04 04 2019 - "Critical appraisal of Clinical Practice Guidelines"

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 experience”

05 12 2018 - “Education and Training gaps, results from TransplantChild physician and nurses survey”
 
Networking & Knowledge working group
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 activity"

11 10 2018 - “Quality and safety Survey”
 
IT platform pills
25 04 2019 - "CPMS new features and activity report"

01 11 2018 - "Overview CPMS and Virtual consultations"

06 09 2018 - "DEMO CPMS FOR NEW USERS TRANSPLANTCHILD"
 
Research funding pills
03 01 2019 - Research funding office pills

13 09 2018 - Next Research European Calls
 
 
Show full Webinar Calendar 2018-2019

First course “Hot topics in paediatric transplantation (solid organ and hematopoietic stem cell transplantation)”  

Available sessions on our E-Learning Platform
Upcoming Events

1st TransplantChild Course
“A transversal approach on Paediatric Transplantation”

09th of May 2019 -  La Paz University Hospital - Madrid Spain

 

More information about the Course
See TransplantChild Course 2019 - Full Programme

6th TransplantChild - Board of the Network


10th - 11th of May 2019 -  Face to Face Meeting
 La Paz University Hospital
Madrid, Spain


 
Next Webinars 
 

May

Date
(4pm CET)

 

May 16

Research WG meeting

May 23

EaT WG meeting

 

June

Date
(4pm CET)

 

Jun 06

CPG WG meeting

Jun 13

Networking/Knowledge management WG meeting

Jun 20

ERN IT platforms pills

Jun 27

Monthly Transplantchild update

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