What does “OrphanAnesthesia” stand for?
‘Orphan’ has its origin in the Greek language (ορφανός) and was first applied 1983 for drugs used in rare diseases. ‘OrphanAnaesthesia’ refers to the anaesthetic approach and considerations for patients with rare diseases.
What is a rare disease?
A disease is called ‘rare’ when it affects only a small number of patients. This definition can vary between countries and over time. In Europe, a disease is considered to be rare when it affects not more than 5 of 10,000 people.
How was OrphanAnesthesia started?
The project was initiated by the Scientific Working Group of Paediatric Anaesthesia of the German Society of Anaesthesiology and Intensive Care Medicine in 2005. At this time, the idea of an open access database with information about anaesthesia in patients with rare diseases was born.
What is Orphanet?
Orphanet (www.orpha.net) is a French working group of the Institute National de la Santé et de la Recherche Médicale (INSERM) in Paris, France founded in 1997 and supervised by administrative, editorial, and scientific boards. Orphanet provides information about rare diseases including: patient organisations, scientific research projects, and referral centres. Orphanet contributes disseminating our OrphanAnesthesia guidelines.
What is the vision of OrphanAnesthesia?
The aim of the OrphanAnaesthesia project is the publication of guidelines for the anaesthetic management of patients suffering from rare diseases, with the hope of increasing the safety for patients. To improve patient safety, OrphanAnaesthesia hopes to gain wide dissemination for guidelines produced. Such dissemination would be greatly advanced by endorsement of European anaesthesiology societies.
Why are the guidelines published in English?
At its inception, OrphanAnaesthesia was planned as primarily a European project. The decision to publish the guidelines in English was made to facilitate international collaboration, dissemination, adoption, and endorsement. Translations into other languages are encouraged; non-English speaking authors are asked to provide translation into their native language.
How can I contribute to OrphanAnesthesia?
All European colleagues are strongly encouraged to contribute to OrphanAnaesthesia.
OrphanAnaesthesia has an international base of support and engagement that now has come to include Americans and others, as well. Those wishing to participate in the OrphanAnaesthesia project may do so by preparing a guideline for review; volunteering to act as a reviewer or translator; recommending a potential reviewer or author; suggesting a rare disease; or submitting information about patient organisations or other relevant materials. Please do not hesitate to contact us!
Are OrphanAnesthesia guidelines citable for academic purposes?
All OrphanAnaesthesia guidelines are citable, but beginning with the May 2014 issue, OrphanAnaesthesia guidelines are also published as a monthly supplement of the peer-reviewed medical journal, Anästhesiologie & Intensivmedizin (A&I). Versions of the guidelines published in A&I are considered peer-reviewed academic publications.
Please find a list of all guidelines published in A&I on http://www.orphananesthesia.eu/en/rare-diseases/guidelines-published-in-aai.html