Pediatric Liver Transplantation Global Census TC – Oct 2019

Date:

Time:

Location:

Monday, 28 October 2019

15:00 Central Europe Time (CET)

Zoom

Attendees: Executive Committee:  Claus Niemann (President), Marina Berenguer (President-Elect)

ILTS Pediatrics Committee: Fidel Lopez Verdugo, Mohamed Rela, Srinivas Reddy

Excused: Michael Charlton, Manuel Rodriguez-Davalos, Muero Kasahara, Paolo Muiesan, Qiang Xia, Johnny Hong (Pediatrics Committee)

Secretariat: Clara Hijano & Jwana Ribeiro da Silva (Association Manager)

Reference Document: ILTS Pediatric Liver Transplantation Global Census Report

Agenda Topic

Person Reporting

Notes

Topic 1: Power point presentation – Clarifications
Questions/answers Mohamed Rela –        Slide 4: 108 is the total number of participating programs (not a percentage)

–        Slide 7: Grey is when the centres did not respond -> all centers were contacted

–        Slide 17: opportunities are for fellows

Additional Information Fidel L.Verdugo –        Survey response rate = 68%
Topic 2: Opportunity

Fidel L.Verdugo –        No other institution can build such a registery

–        A stepping stone that most contributions of living donors and pediatric LT are made in Asia

Topic 3:   Weaknesses 
Missing data Mohamed Rela,  Fidel L.Verdugo, Claus  Niemann –        There were difficulties in convincing centers to share their data, this especially in China, India and South America

–        Data for some countries is incomplete (France, Germany etc.)

–        Cross contamination is not captured (patients travelling for undergoing surgery)

Regional division Claus  Niemann –        The Middle East region is not distinguished from Asian/African continent

–        Russia entirely considered as Europe

Topic 4: Threats/Implications of managing a formal database
Infrastructure Claus  Niemann –        Database management may cause significant financial distress (as it does for Elita)
Bylaws –        Define: who has access to the database? In what form? Etc.

–        Quality control considerations

Updating the data –        Risk of fatigue of participating centers; data entry constancy
Topic 5: Next steps
Writing Claus  Niemann –        Prepare/write down Analysis
Regional Approach Claus Niemann, Srinivas Reddy –        Slicing the data to show contribution of India/China/South America. Opportunity for Brand positioning in LA and Asia

–        Acquire more data from the respondents. Focus on the missing data and compile with existing

Publication format Claus Niemann,

Marina Berenguer,

Mohamed Rela

–        Table of acknowledgement of respondent centers

“Communication” publication format in case the content is not enough for a full-paper

–        Transplantation will be very interested.

–        High potential for citations