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Newsletter August 2019

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7th Board of the Network


November 11th & 12th of 2019
Azienda Ospedaliera di Padova, Padova, Italy

REGISTRATION IS OPEN

Register for the Board of the Network
News

2019 call for membership to the existing ERNs will open soon

 
Three key documents are now available for candidates to prepare their applications for the imminent Call for membership to existing ERNs, and are available on the website:
  • The “ERN Assessment manual for applicants: description and procedures” provides the applicants with an overview of the assessment and the application process to join an existing ERN, called “Assessment programme of the ERNs”.
  • The “ERN Assessment manual for applicants: operational criteria for the assessment of Healthcare Providers” describes the conditions that must be met to fulfill the criteria for a successful application by meeting the necessary requirements.
  • The “Specific criteria” document offers a clear overview of the criteria that applicants are required to fulfil in terms of diseases coverage and thresholds.
More information & documents

Way of Saint James with Somos Nupa



 
The Spanish Patients' Association Somos Nupa organized the First Way of Saint James for children with intestinal failure, parenteral nutrition or multivisceral transplants. The activity was divided in three stages corresponding to different days, and the association made a video from each day. They succesfully arrived to Santiago de Compostela as it is appreciated in the picture above. They used the motto of "No impossible ways".
 
Video of the first stage
Video of the second stage
Video of the third stage
ERN Activities

CPG Protocol published in PROSPERO



 
The Protocol applied in our  Clinical Practice Guideline (CPG) on "Immunosuppression minimization, conversion or withdrawal to reduce toxicity in paediatric solid organ and bone marrow transplantation" has been published in PROSPERO, an International prospective register of systematic reviews.
 
Read the Protocol in PROSPERO

CPG Systematic Review Status

 
 
After finishing the Screening by Title and Abstract with more than 55,000 articles, around 4,500 were included for the Full text Screening. These papers have been already retrieved and are now being reviewed by our CPG team. This phase should be finished by the end of September to begin with the Data Extraction process.
 
Access our CPG in COVIDENCE

CPMS Activity



 
TransplantChild members have already introduced 9 patient cases into the Clinical Patient Management System (CPMS) since March 2019. The objective is to have registered, at least, 38 cases by the end of February 2020.

To achieve this goal, our IT Helpdesk Support, Belén López, will be visiting two HealthCare Providers in the following month: Hannover Medical School, in Germany, and Centro Hospitalar e Universitário de Coimbra, in Portugal. Our Helpdesk will be helping the health professionals to introduce the cases into the CPMS and encourage them to collaborate in the panels that are still open.
Access the CPMS

Available Webinars

 
 All groups 
 05 09 2019 - "TransplantChild All Groups Update"
 
 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 
 07 08 2019 - "Screening by full text"

 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 
 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
                       activity"

 11 10 2018 - “Quality and safety Survey”
 
 ERN IT platforms and registry pills 
 13 08 2019 - "TransplantChild registry proposal
                       update"

 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
                       consultations"

 06 09 2018 - "DEMO CPMS FOR NEW USERS
                       TRANSPLANTCHILD"
 
 Research funding pills 
 14 08 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 Webinar Calendar
Upcoming Events

International Summer School on Rare Diseases Registries and FAIRification of Data

 
 
Belén López and Gonzalo Sofío, members of the TransplantChild team working on the development of the TransplantChild registry, are attending the "International Summer School on Rare Diseases Registries and FAIRification of Data", organized by the European Joint Programme (EJP), that will take place in Rome from September 23rd to the 27th.

This course is composed of two training modules:
  • The first module “Rare Disease Registries” starts on September 23 till September 25, 2019, during these three days participants will learn (a) what resources are needed for the establishment / maintenance of a high quality registry (b) the features of successful strategies to ensure (i) long-time sustainability of the registry, (ii) quality, (iii) legal and ethical issues in compliance with the EU General Data Protection Regulation and (iv) FAIR principles.
  • The second module “FAIRification of data”, starts on September 26 till September 27, 2019 during these two days participants, working with IT-trainers, will make use case data FAIR. The potential of a FAIR registry, as the basis for cross resource questions, will be demonstrated by executing a query across the use cases that become FAIR. In this part a time slot will be allocated to discuss FAIR data management and FAIR project planning.
The attendance to this summer school will help our network to clarify the most technical issues of the registry and finish the TransplantChild Registry Proposal.
 
Check the event information

Next Webinars 

 

September

Date

 

Sep 12

ERN IT platforms and registry pills

Sep 19

EaT WG meeting

Sep 26

CPG WG meeting


 
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