Pediatric Liver Transplantation Global Census TC – Nov 2019

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Date:

Time:

Location:

 Monday, 25 November 2019

15:00 Central Europe Time (CET)

Zoom

Attendees: Executive Committee:  Claus Niemann (President),

ILTS Pediatrics Committee:  Srinivas Reddy, Fidel Lopez Verdugo, Manuel Rodriguez-Davalos,  Paolo Muiesan, Patrizia Burra

Secretariat:  Jwana Ribeiro da Silva (Association Manager)

Excused: Mohamed Rela,  Muero Kasahara,  Johnny Hong, Qiang Xia, Michael Charlton (Pediatrics Committee),  Elizabeth Pomfret Marina Berenguer (President-Elect)

Reference Document: ILTS Pediatric Liver Transplantation Global Census Report

Agenda Topic Person Reporting Notes / Reference Document
Topic 0: Muero Kasahara’ comments
Not discussed –       Comments and improvement suggestions from Mureo Kasahara

Ref document: email from kasahara-m@ncchd.go.jp, Mon 25 Nov, 7:56 AM CE, Subject “Re: ILTS Pediatric Liver Transplantation Global Census TC Nov 2019”
Topic 2: scope of the project  
Why a Census and not a Registry Manuel Rodriguez-Davalos –        Initial idea of a “registry”: how many children have access to LT? how many do not? and how can ILTS help?

–        Problematic of data housing complexity:

o    Potential financial distress

o    Have the centers pay a fee to appear in the registry – not feasible

o    Institutions are assigned to manage the registery on a volunteer basis, guided through ILTS – difficult to implement

o    Constraining data sharing regulation in the EU and USA

–        A census is less complex and can always be expanded
Undefined denominator of the census Claus Niemann –        Suggestions to indicate to the reader the denominator is non clearly defined

o    An index

o    Discuss in the limitations of the study, e.g. response rate was lower in some regions
Topic 2: Future opportunity
Increase data collection Manuel Rodriguez-Davalos –        ILTS could go back to the centers that did not participate before (out of 156 centers, 108 participated)
Expanding the scope Paolo Muiesan –        Follow up of the children: maybe a bridge to an adult census
Topic 5: Next steps
Oral presentation in Istambul Paolo Muiesan –        Manuscript writing in progress

o     first draft will be circulated to the end of Nov 2019

–        Abstract submission for ILTS 2020
Acknowledgments Srinivas Reddy –        Suggestion to send a summary of findings to the participants
Claus Niemann –        Suggests thanking participants in the manuscript directly (e.g. in appendix)
ILTS registry inbox

–        As the census closes, participants and readers should be invited to contact ilts@ilts.org

–        ACTION: Claus to inform John Klinck