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Newsletter #26

Paediatric ERNs Crosstalk

Crosstalk between European Reference Networks (ERNs) is an important task that could help the treatment of rare diseases and conditions. Therefore, it is necessary that the networks start collaborating and working together in overlapping areas, as this has the opportunity to improve healthcare.

We have identified crosslinks with every network that performs transplantation, but most importantly with the ones treating paediatric patients. This is why we created a video intended to promote collaboration across all Paediatric ERNs.

From TransplantChild, we truly believe in the need to care and treat patients in a specific way, attending to their precise needs as children. Listening to their opinions and experiences, in order to make them part of the network. The ERNs provide us with the perfect framework for working together on common projects that can improve the lives of these children in different areas.

 

The video was presented in the last Coordinators Group meeting in Brussels on November 14th and 15th by our Coordinator Dr. Paloma Jara and our Technical Director Mrs. Marisa Tejedor, receiving very positive feedback. However, this is just the beginning: the purpose of the video was to motivate Paediatric ERNs to collaborate. Therefore, it is time to join forces and start working together for the future of children.
 
News

Course website
Pre-registration
ERN Activities

Patient Reported Outcomes Measures



 
Dr. Samantha Anthony was invited to the 7th Board of the Network to present her project: "Patient-reported outcome measures within pediatric solid organ transplantation: A systematic review". From TransplantChild, we are willing to work and research in PROMs and Patient Reported Experiences Measures (PREMs). We will also integrate PROMs in our registry, so we will be collaborating with Dr. Anthony to keep promoting research in these areas.
 
More information

Patients Experiences Workshop

 


Patients representatives & Associations were the protagonists of the first day in Padova. One of the main sessions was the Patients Experience Workshop. The objective of this activity was to identify patients’ opinions on the areas and indicators of the patient journey through paediatric transplantation. Three different materials were necessary for the correct workshop development:
  • Poster of patient journey, showing the different areas for patient contact.
  • Set of areas, which are the points of contact between patients and health system.
  • Set of indicators. These are clues, signs or markers that measure one aspect of a journey and show how the patient interact with the health system (structure and staff). Indicators should be described within an area (waiting list, surgery, hospitalization...).



With the previous tools, patients had to go through the following steps to complete the activity:
  1. Decide if they included new areas in the poster.
  2. Include, in each area, the indicator they considered. They could suggest new indicators too.
  3. Identify tools (questionnaires, scales...) to measure indicators if the knew some.
After this individual work, it was necessary to reach a consensus on the areas and indicators among all the participants in the workshop.
 

II TransplantChild CPMS Workshop



 
Our Helpdesk Support, Ms. Belén López, introduced the II TransplantChild CPMS Workshop took place in the last Board of the Network Meeting in Padova. The participating clinicians were divided in two different groups and 7 clinical cases were presented (3 in one group, 4 in the other one). The cases were discussed in their respective groups, trying to reach consensus for outcomes.


 
To finish the workshop, the participants filled in a questionnaire evalutaing the presentations, with the objective of finding the best case in each group. The two most voted cases were awarded with the covered attendance to one European congress in the next year. The prize was given to Dr. Serena Abbate, from ISMETT, and Dr. Sandra Ferreira, from Centro Hospitalar e Universitário de Coimbra.


 

Patients-perceived results poster



We presented a poster in the XII Humanization Day at the Hospital Sant Joan de Deu in Barcelona, Spain, on November 22nd. It was titled "Strategies for the implementation of patients-perceived results in ERN TransplantChild". The poster, that was explained by the Nursing WG Coordinator Mrs. Mª Jesús Pascau, features the design, implementation and validation of PROMs and PREMs in the field of paediatric transplantation.
 
Read the poster

Latest Webinars

 
 All Groups 
 05 09 2019 - TransplantChild All Groups Update
 
 Healthcare Working Group 
 24 10 2019 - Program of clinical audits in paediatric
                      transplantation

 04 04 2019 - CPMS TransplantChild activity
 
 Clinical Practice Guidelines Working Group 
 28 11 2019 - Risk of bias

 26 09 2019 - Data extraction
 
 Research Working Group 
 07 03 2019 - Promoted research: pitfalls and
                      opportunities in the whole European
                      research scenario
 
 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
 
 Networking & Knowledge Working Group 
 05 12 2019 - Sharing and retention of generated
                      knowledge

 13 06 2019 - Human capital
 
 Quality and Safety Working Group
 10 10 2019 - Participation in the DG SANTE WG on
                      Continuous Monitoring

 11 04 2019 - Perceived quality by patients, families
                      and relatives
 
 ERN IT Platforms and Registry Pills 
 14 11 2019 - Registry General Considerations

 31 10 2019 - PaEdiatric Transplantation European
                      Registry
 
 Research Funding Office Pills 
 14 08 2019 - Next H2020 Research Calls focused on
                      ERNS

 05 06 2019 - Next Research European Calls
 
 
Webinar Calendar
Available webinars
Upcoming Events


Submissions for poster abstracts are now open (until February 10th). For more information, visit the following link.
 

Related Events & Calls from EJP-RD


11 – 14 March 2020, Berlin, Germany
 
"Pre-clinical research to develop effective therapies for rare diseases"
Joint Transnational Call 2020

"Demonstration projects on existing statistical methodologies to improve RD CT"
Clinical Trials Methodology Demonstration Projects
EJP RD Internal Call for Proposals 2019
 

Next Webinars 

 
November
Date  
Dec 12 Research WG meeting
Dec 19 E&T WG meeting

 
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