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Newsletter #28

8th TransplantChild Board of the Network

Due to the epidemic trend of the COVID-19, the 8th Board of the Network has been modified to a remote format, by videoconference using the Webex Meetings. It will be held on May 14th in the morning. We will update you with more information soon.


Due to the epidemic trend of the COVID-19, the workshop has been postponed. It will be celebrated in Warsaw in autumn of 2020. We will update you soon with the new dates.
 
News

30th Anniversary of first successful liver transplantation in Poland

 
 

Children's Memorial Health Institute organized a special conference in commemoration of the 30th Anniversary of first successful liver transplantation in Poland, that was performed by their team, with their oldest patients living already 30 years after transplantation, parents, patients organizations, cooperating teams, media etc. As stated by Professor Piotr Kalicinski "It was really wonderful to see us again in old films from 30 years ago". The presentation they gave in the event is available in the following link.
 

Check the presentation

Preventing intestinal damage during stem cell transplantation



 
Researchers may have found a way to prevent intestinal damage during stem cell transplantation. Donor stem cells can damage the intestinal membrane of children in a life-threatening way. As stated by Dr Caroline Lindemans, from the Prinses Máxima Centrum (Utrecht) and TransplantChild member: "By administering ruxolitinib early in the treatment, we may be able to protect the intestinal mucosa".
 
Caroline Lindemans investigated how the T cells damage the intestinal mucosa. "The T cells in the donor bone marrow secrete a substance that damages and even destroys intestinal stem cells, causing long-term damage to the intestine. If this happens we will treat it with more anti-immune drugs such as Prednisone. But the treatments we give now to inhibit T cells do not work well enough. Too many children still die from Graft-versus-Host Disease (GvHD)."
 
"The death of a child from GvHD is terrible," says Dr Lindemans. "The intestinal damage causes very serious diarrhoea, making the child weaker. It is also inconceivable for parents that, after finally getting cancer under control in their child, they can also be bitten by another dog."
 
The findings were published in the journal Science Immunology. The project was conducted at the Child Health and Regenerative Medicine department at UMC Utrecht and at the Memorial Sloan Kettering Cancer Center. "We must now investigate whether it also works with children with GvHD", says Dr Lindemans. "We hope to start a clinical study to find out."
 
Read the full article

Rare Disease Day



Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

Some key statistics on rare diseases:
  • Over 300 million people around the world are living with a rare disease.
  • There are over 6,000 identified rare diseases.
  • 72% of rare diseases are genetic.
  • 70% of genetic rare diseases start in childhood.
More information in the website
ERN Activities

Le malattie rare e gli European Reference Networks

 

 
ERN Reconnet organized a meeting about Rare Diseases for all ERNs in Pisa, Italy, on February 22nd. Dr Giorgio Perilongo, Head of Paediatrics in Azienda Ospedaliera di Padova, was the TransplantChild representative in the event. Dr Perilongo gave a short presentation about TransplantChild and the most important activities in the network nowadays.

Next Clinical Audit: Vaccines
 


 
The TransplantChild Healthcare WG is working in the next clinical audit: "Vaccination in paediatric transplantation". It will be led by Dr Daniele Dona from Azienda Ospedaliera di Padova. In the last Board of the Network in Padova, the preliminary survey was presented, receiving some small suggestions with the aim of simplifying the questionnaire to facilitate data collection.
 

European Reference Networks Clinical Guidelines


The European Commission organized a meeting on 6th of February in Brussels for the presentation of the Clinical Patient Guidelines Support Tools to be given to the European Reference Networks (ERNs) in the upcoming years. The objective is to promote the development of Clinical Practice Guidelines (CPG) in the ERNs.
 
Our CPG Developers, Dr Carlos Martín and Laura Pruneda, attended the meeting in Brussels and presented the methodology we are following from TransplantChild in the development of our CPGs.
 

First course:
“Hot topics in paediatric transplantation"
(solid organ and haematopoietic stem cell transplantation)

 
Pre and post liver transplantation

Latest Webinars

 
 All Groups 
 05 09 2019 - TransplantChild All Groups Update
 
 Nursing Teams Working Group
 16 01 2020 - Presentation
 
 Healthcare Working Group 
 06 02 2020 - Vaccination in paediatric transplantation

 24 10 2019 - Program of clinical audits in paediatric
                      transplantation
 
 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 
 09 01 2020 - Education plan 2020

 19 12 2019 - Patient Education & Training Gaps
 
 Networking & Knowledge Working Group 
 05 12 2019 - Share and retain the generated
                      Knowledge

 13 06 2019 - Human capital
 
 Quality and Safety Working Group
 13 02 2019 - Quality and Safety activity survey
                      annual data update

 10 10 2019 - Participation in the DG SANTE WG on
                      Continuous Monitoring
 
 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


 

 
March
Date  
Mar 26 IT Platforms
 
April
Date  
Apr 02 Networking/Knowledge Management WG
Apr 16 IT Platforms

 

The event will be celebrated ONLINE.
For more information, visit the following link.
 

Related Events & Calls from EJP-RD


ERNs Rare Diseases Training and Support Calls
Deadline for the Research Mobility Fellowship: 16 March
Deadline for the Research Training Workshop: 2 March

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

Networking Support Scheme (NSS) Call
This call is open on a continuous basis
 
Training on strategies to foster solutions of undiagnosed rare disease cases
27 – 29 April 2020, Rome, Italy
 
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