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CC BY-NC-ND 4.0 · Eur J Pediatr Surg 2024; 34(02): 172-181
DOI: 10.1055/a-2212-6874
Review Article

The Development of the International Intestinal Failure Registry and an Overview of its Results

Yaron Avitzur
1   Division of Gastroenterology, Hepatology, and Nutrition, Transplant and Regenerative Center, Group for Improvement of Intestinal Function and Treatment, The Hospital for Sick Children, Toronto, Ontario, Canada
,
Eric Pahl 
2   Registry Data Analyst and Administrator, International Intestinal Rehabilitation and Transplant Association, The Transplantation Society, Montreal, Quebec, Canada
,
Robert Venick
3   Graduate Research Fellow, Health Informatics, University of Iowa, Iowa City, Iowa, United States
4   Department of Pediatrics, Division of Pediatric Gastroenterology, Hepatology and Nutrition, Mattel Children's Hospital, David Geffen School of Medicine at University of California Los Angeles, Los Angeles, California, United States
,
and the International Intestinal Failure Registry › Author Affiliations
› Further Information
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Abstract

Pediatric intestinal failure (IF) is a rare disease that represents an evolving field in pediatric gastroenterology and surgery. With only a limited number of multicenter collaborations, much of the research in pediatric IF is often confined to single-center reports with small sample sizes. This has resulted in challenges in data interpretation and left many knowledge gaps unanswered. Over the past two decades, five large multicenter collaborations, primarily from North America and Europe, have published their findings. Apart from one ongoing European adult and pediatric registry, these relatively large-scale efforts have been concluded.

In 2018, the International Intestinal Failure Registry (IIFR) was initiated by the International Intestinal Rehabilitation and Transplant Association to continue these efforts and answer some of the knowledge gaps in pediatric IF. The IIFR goals are to prospectively assess the natural history of children diagnosed with IF and creating a worldwide platform to facilitate benchmarking and evidence-based interventions in pediatric IF. A pilot phase involving 204 enrolled patients was initiated in 2018 to assess the feasibility of an international IF registry and refine the study protocol and data collection forms. Following the successful completion of this phase, the current phase of the IIFR was launched in 2021. As of May 2023, the registry includes 362 prospectively followed children from 26 centers worldwide. This review provides an overview of the development, structure, and challenges of the IIFR, as well as the main findings from both the pilot and current phase.

Keywords

intestinal failure - registry - children - outcome - structure


Publication History

Received: 25 October 2023

Accepted: 04 November 2023

Accepted Manuscript online:
16 November 2023

Article published online:
19 January 2024

© 2024. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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