Study ARM and diet

We would like to present our study on bowel function and nutrition in patients with anorectal
malformations (ARM): NECTAR – Nutrition, Bowel Function, Anorectal Malformations.

The aim of this study is to improve our understanding of the relationship between nutrition
and bowel function in patients with ARM. To achieve this, we have developed a
comprehensive survey covering dietary habits, bowel-related symptoms, and the challenges
patients may experience in their daily lives. Through this study, we hope to identify foods that
commonly influence bowel function and to develop evidence-based recommendations for
clinical care and dietary management.

This patient-reported outcome study is coordinated by a multinational working group
consisting of paediatric surgeons from ARM-Net centres, dietitians, epidemiologists, and
representatives from patient organisations both within and outside the ARM-Net consortium.
The survey was originally developed in English and has subsequently been translated into
multiple languages, including German, Dutch, Swedish, Spanish, Polish, Turkish, Lithuanian,
and several others.

The survey is intended for patients with ARM aged 3 to 18 years. Participants aged 12 to 18
years can complete the questionnaire themselves, with support from their parents if needed.
For children aged 3 to 12 years, the questionnaire will be completed by their parents or
caregivers on their behalf.

The online survey will be launched at the end of 2026 and distributed through ARM-Net
clinical centres, patient organisations, and national ARM support groups across Europe and
Latin America. Once data collection and analysis have been completed, the study results will
be shared through the participating patient organisations and published on this website. The
first results are expected to be available in 2027.

Project leaders: Judith Lindert and Iris van Rooij