What does the name "OrphanAnesthesia" mean?
The root word "orphano" means "orphan" as an adjective and "orphan" or the "orphan" as a noun. Rare diseases are also called "orphan diseases" in English. The "OrphanAnesthesia" project is a European project. For this reason, we have chosen to use the English spelling.
What is a rare disease?
In the European Union, a disease is considered rare if it does not affect more than 5 out of 10,000 people. Currently, about 8,000 diseases are classified as rare. Several hundred are added every year. According to estimates, about 4 million people in Germany suffer from a rare disease. In the entire European Union, there are about 30 million. Worldwide, there are even about 300 million.
How did the project come about?
Since 2005, the scientific working group on paediatric anaesthesia of the German Society for Anaesthesia and Intensive Care Medicine (DGAI) has been working on setting up a database with information on rare diseases. The project was described as forward-looking by the presidium of the DGAI and has since been officially supported by the DGAI.
What is "Orphanet"?
Orphanet (www.orpha.net) is a French working group established in 1997 as a separate research unit (SC11) at the Institut National de la Santé et de la Recherche Médicale (INSERM), Paris. Orphanet provides information on rare diseases through specialised outpatient clinics, research projects and self-help groups. It is coordinated and managed by the INSERM Board. Orphanet's work is overseen by a Board of Directors, a Scientific Advisory Board and an Editorial Advisory Board.
More than 40 countries are involved in the project, some with their own working groups. The German group of orphanet is located at the Hannover Medical School under the direction of Joerg Schmidtke (www.orphanet.de).
Since 1998, an encyclopaedia with information on more than 6000 diseases has been available on the Internet. Some of the data is available in five languages. Funding comes from various sources (European Commission, budget items "public health" and "research" as well as French budget, association of health insurance companies, etc.).
What is the vision behind OrphanAnesthesia?
The aim of OrphanAnesthesia is to publish recommendations for the anaesthesiological care of patients with rare diseases. In this way, the project wants to make a contribution to increasing patient safety. In the long term, it is hoped that this will be supported by all European anaesthesia societies.
Why does the whole thing have to be written in English? - Can't it also be done in German?
The OrphanAnesthesia project was planned as a European project from the very beginning. Thus, the individual text contributions have to be written primarily in English. Authors are invited to translate their or other contributions into their mother tongue as well.
Can I contribute to OrphanAnesthesia?
Absolutely, all colleagues are invited to participate. This applies not only to Germany, but also to all other countries within or outside Europe.
You can create or correct a recommendation for action yourself, suggest reviewers, send us information on patient organisations or other interesting material. It doesn't matter what kind of contribution you make, we are looking forward to everyone helping at OrphanAnesthesia.
Even anyone without a medical background can help! With a donation or the possibility to make our project better known, we can advance the project together. Please get in touch with us!
Are the recommendations for action citable?
As of issue 5/2014, two recommendations for action will be published monthly as supplements to A&I. As part of the A&I, the recommendations for action are therefore also citable.