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Newsletter May 2019

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6th TransplantChild Board of the Network

The 6th Board Meeting took place on the 10th and 11th of May in La Paz University Hospital (Madrid, Spain). 16 member hospitals attended the meeting. During this event, the TransplantChild members worked together on the ongoing tasks of the working groups. Moreover, all the relevant aspects and activities related to TransplantChild were reviewed. The focus was put on the ERN's key issues: the development of clinical practice guidelines (CPG), the utilization of the CPMS and the network registry proposal.
News

3rd Health Programme:
Rare diseases registries for the ERNs

The European Commission opened a new Call, as part of the 3rd Health Programme, to provide the European Reference Networks (ERNs) with resources to develop rare diseases (RD) registries. The Call started on May 21st and its deadline is on September 10th at 17:00 Brussels time.
More information
ERN Activities

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

The 1st TransplantChild International Course was held on the 9th of May in La Paz University Hospital (Madrid). This course was attended by international speakers from different countries and centers, who gave talks on their specific areas of transplant work. Many different aspects were discussed, but the transversal approach of TransplantChild was always maintained..

Check the course website

EJP-RD MEETING

The European Joint Programme on Rare Diseases (EJP-RD) held a meeting in Rome, from the 22nd to the 24th of May. One of the main issues addressed under Pillar 2 was the ERN registries. The EJP-RD will work together with the ERNs in the development of the registries. It aims to promote standardization, interoperability, and FAIRification of data. In addition. Specific training courses will be organised for the ERNs for the proper functioning of the registers.
Read more about the EJP-RD

CLINICAL PRACTICE GUIDELINE ONLINE COURSE IS AVAILABLE!

The Clinical Practice Guidelines Course is already available online. It consists of 5 theoretical videos plus 4 practical exercises explained.

The objective is to offer an introductory training to all professionals interested in the development of CPG and especially to those involved in the Clinical Practice Guidelines Working Group. The training includes a practical approach to all task within the CPG process with a definition of the roles.

The hands-on methodology and case-based learning provide an introductory knowledge to the main tools used in CPG development, mostly GRADEpro GDT.

Access the course on our website

Paediatric Transplantation meeting in Padua

Dr. Paloma Jara, Coordinator of the network, and Dr. Esteban Frauca, Coordinator of the Healthcare WG, attended the event of  Day on Paediatric Transplantation in Padua on May 24th. Dr. Jara presented TransplantChild and its main objectives and tasks. Also, other TransplantChild members were present. 

 
 

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
                      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
06 06 2019 - Next H2020 Research Calls focused on
                     ERNs

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 

 

June

Date
(4pm CET)

 

Jun 13

Networking/Knowledge management WG meeting

Jun 20

ERN IT platforms pills

Jun 27

Monthly Transplantchild update

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