OrphanAnesthesia – Getting the key points right for anaesthesia in patients with rare diseases

• Published in: Trends in anaesthesia & critical care Vol. 22; pp. 22 - 25
• Main Authors: Weith, Thomas, Münster, Tino, Prottengeier, Johannes
• Format: Journal Article
• Language: English
• Published: Elsevier Ltd 01.10.2018
• ISSN: 2210-8440
• DOI: 10.1016/j.tacc.2018.04.017

Sooner or later, every anaesthesiologist will provide care for patients that suffer from a rare disease, be it from comorbidities related or unrelated to their special diagnosis. Syndromes may be accompanied by a phenotype prone to complications during anaesthesia, but expert knowledge on rare diseases is not a given - usually. Therefore in-depth preparation on these patients is essential. Literature regarding anaesthesia and rare diseases is limited and some might be of poor quality. In this article we reflect on different resources and strategies to prepare for anesthesia on patients suffering from a rare disease. Special focus will be laid on quality indicators for medical information and we will introduce OrphanAnesthesia, a growing database of high-quality, disease specific and practical recommendations for anesthetic procedures. -Getting in professional contact with a rare disease patient is probable for every anaesthesiologist.-Rare diseases go along with several risk factors for anaesthesiological complications.-Preparation on rare disease patients requires a structured approach.-We present some resources providing high quality information about anaesthesia in rare disease patients.