Intestinal failure is a rare disease. Accurate outcome data and research in intestinal failure has historically been limited by small patient volumes at individual centers. To meet the need for a global collaborative effort to track and report current trends in intestinal failure, the International Intestinal Rehabilitation and Transplant Association (IIRTA) established a dedicated registry for intestinal failure. Twelve centers participated in a successful pilot of the registry from 2018-2020. Following this phase, the IFR began collecting data in 2021.

The IFR is owned and managed by the IIRTA with support from The Transplantation Society (TTS). Scientific work is directed by a subcommittee of the Scientific Committee of the Association.

The IFR is endorsed by the North American Society for Pediatric Gastroenterology and Nutrition (NASPGHAN) and the American Society for Parenteral and Enteral Nutrition (ASPEN).

The IFR is supported by non-restricted and education grants by Takeda LTD and Stanford University & the Lucile Packard Children’s Hospital

• Creation of a large international database of pediatric intestinal failure to inform on worldwide trends and outcomes beyond single center experiences
  
• Creation of benchmarking and learning networks in pediatric intestinal failure
  
• Identification of favorable interventions and treatments to inform on best practices and evidence-based treatment approaches

Centers prospectively enroll participants and enter data into the registry at baseline (2 months after the diagnosis of intestinal failure), 6 months, 1 year, and then annually. Data is compiled, verified, analyzed and presented in aggregate form to the IIRTA membership at the Biennial Congress of the International Intestinal Rehabilitation and Transplant Association (CIIRTA) and other international meetings. Centers retain full access to their own center data and benefit from an electronic REDCap based database. Patient privacy and confidentially is retained at all stages of data reporting and storage. Participating centers can submit further research queries to the subcommittee, and each request will be considered on a case-by-case basis.

The IFR is currently collecting data on pediatric patients (<18 years of age) with intestinal failure. The adult arm of the IFR is in development and will be launched in the coming years.

The IIFR prospectively collects the following information:

• Demographic characteristics
• Intestinal Failure Diagnosis
• Surgical history and resultant bowel anatomy
• Nutritional history
• Medical therapies
• Medical and surgical complications
• Developmental status
• Overall patient outcome including achievement of enteral autonomy or transplantation

Data are presented in aggregate form only, and international privacy and data security have been met to ensure patient data and center confidentiality.

Large volume pediatric Intestinal rehabilitation programs with a multi-disciplinary team and at least 10 new patients/year were invited to participate in the pilot phase.

A retrospective and prospective data collection of children diagnosed with intestinal failure (need for PN for >60 days) in 2017-2018 was conducted. Data was collected at baseline (2 months after diagnosis of intestinal failure), 6 months and 1 year. All children were followed for at least 1 year. The collected data included information on patient demographics, surgical history, nutritional status, medication use, surgical and medical complications and functional and overall patient outcome.

Data management and analysis was supported by the Terasaki Research Institute.

The IFR pilot phase was launched in July 2018 and successfully completed in January 2020. A total of 204 children from 12 centers around the world were enrolled into the pilot phase. The information gathered in the pilot phase and quality assurance analysis of the data supported the revision of the IFR questionnaire and protocol.

Highlights of the pilot phase are presented in the following figures:

Participating centers around the world

Diagnosis of Intestinal Failure

1 year patient outcome

Participating centers and principal investigators

The scientific committee publishes registry reports annually at PIFRS and CIRTA.

The most recent presentation is available via this sharepoint link.

Participating centers around the world have access to annual dashboard reports that compare their experiences with the IIFR.

Center specific reports are protected with email verification for center investigators.

Access to the reports is available via this sharepoint link.