National registry of patients with short bowel syndrome

In Sweden, with a population of 9 million, there are an estimated 400 people suffering from short bowel syndrome (SBS). These patients are dispersed throughout the country and are cared for mostly by ordinary health-care providers, who have limited experience with SBS. During the last decade the patients and their organizations have expressed increasing concerns about competent and equally distributed care. Against this background, the National Association of People with Stomach and Bowel Diseases, together with a faculty of experts in the field, created a web-based registry to facilitate follow-up and to improve quality of care of SBS patients. Their homepage, www.swegir.com/KTS, is based on the Swedish General Internet Registry administered by the Swedish Society of Surgery and Gastroenterology. Its homepage includes some information on SBS for the public, as well as links to a health manual on SBS and different associations. Behind a fire-wall, health professionals have access to an on-line registry for follow-up of patients with short bowel syndrome. In the future, on-line statistics regarding the number of complications, for example, will be available from the registry. Patients who would benefit from small bowel transplantation could also be identified.