First registry of adult patients with chronic intestinal failure due to short bowel syndrome in Argentina: The RESTORE project

Gabriel E. Gondolesi, Mariana L. Ortega, Mariana Doeyo, Martin Buncuga, Claudia Pérez, Eduardo Mauriño, Florencia Costa, Silvia De Barrio, Alejandra Manzur, Luciana Donnadio, Dolores Matoso, Rodrigo Sánchez Claria, Adriana Crivelli, Héctor Solar

Research output: Contribution to journalArticlepeer-review

3 Scopus citations


Background: Short bowel syndrome (SBS) is considered a low prevalence disease. In Argentina, no registries are available on chronic intestinal failure (CIF) and SBS. This project was designed as the first national registry to report adult patients with this disease. Methods: A prospective multicenter observational registry was created including adult patients with CIF/SBS from approved centers. Demographics, clinical characteristics, nutrition assessment, home parenteral nutrition (HPN) management, surgeries performed, medical treatment, overall survival, and freedom from HPN survival were analyzed. Results: Of the 61 enrolled patients, 56 with available follow-up data were analyzed. At enrollment, the mean intestinal length was 59.5 ± 47.3 cm; the anatomy was type 1 (n = 41), type 2 (n = 10), and type 3 (n = 5). At the end of the interim analysis, anatomy changed to type 1 in 31, type 2 in 17, and type 3 in 8 patients. The overall mean time on HPN before enrollment was 33.5 ± 56.2 months. Autologous gastrointestinal reconstruction surgery was performed before enrollment on 21 patients, and afterward on 11. Nine patients (16.1%) were weaned off HPN with standard medical nutrition treatment; 12 patients received enterohormones, and 2 of them suspended HPN; one patient was considered a transplant candidate. In 23.7 ± 14.5 months, 11 of 56 patients discontinued HPN; Kaplan-Meier freedom from HPN survival was 28.9%. The number of cases collected represented 19.6 new adult CIF/SBS patients per year. Conclusion: The RESTORE project allowed us to know the incidence, the current medical and surgical approach for this pathology, as well as its outcome and complications at dedicated centers.

Original languageEnglish
Pages (from-to)1623-1631
Number of pages9
JournalJournal of Parenteral and Enteral Nutrition
Issue number7
StatePublished - Sep 2022
Externally publishedYes


  • chronic intestinal failure
  • enterohormones
  • home parenteral nutrition
  • intestinal rehabilitation
  • short bowel syndrome


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