Orphanet leds av ett europeiskt konsortium bestående av 38 länder med koordination från Frankrike.
Nationella team ansvarar för insamling av data om specialistkliniker, medicinska laboratorier, pågående forskning samt patientorganisationer i deras respektive land.
Det franska koordinerande teamet ansvarar för Orphanets infrastruktur, förvaltningsverktyg, kvalitetskontroll, diagnosförteckning, klassificering och produktion av encyklopedin.
Orphanet styrs av olika kommittéer, vilka oberoende övervakar projektet för att tillse dess samstämmighet, utveckling och hållbarhet.
På europeisk nivå:
Styrgruppen består av representanter från de myndigheter och organ som finansierar Orphanets infrastruktur och koordination. Ledningsgruppen består av de nationella koordinatorerna och dess ordförande är chefen för Inserm-Orphanet. Redaktionsrådet består av över 100 internationella experter.
På nationell nivå:
De 38 länderna som deltar i Orphanet har var sitt vetenskapliga råd som består av nationella experter från de flesta medicinska specialiteter med erfarenheter från arbete med ovanliga diagnoser. Rådsmedlemmarna konsulteras vid behov för att validera kvalitén av den insamlade informationen samt hjälpa till att identifiera experter inom respektive specialitet.
Sponsorer
Infrastrukturen och koordinationen finansieras i huvudsak av Inserm (det franska nationella institutet för hälsa och medicinsk forskning), det franska direktoratet för hälsa samt av EU-kommissionen (20091215).
Orphanets nationella aktiviteter finansieras av institutioner i de deltagande medlemsländerna och/eller särskilda kontrakt. Karolinska Institutet har tagit på sig rollen som nationell samordnare för Orphanet i Sverige.
Terms of use of the Orphanet website
General information
http://www.orpha.net is a publication of INSERM US14 (Institut national de la santé et de la recherche médicale), 96, rue Didot, 75014 Paris, France.
Editor in Chief of the publication: Odile Kremp, Director of Service N° 14, INSERM.
Web design: INSERM US14
Internet hosting: INSERM - Information Systems Department
Warning
The website is governed by French law. Users outside of French territory must categorically accept the enforcement of French laws when visiting the website and using any of the website’s functions.
To the best of its ability, INSERM US14 aims to ensure the accuracy and the regular update of information at the moment of publication on the website.
However, INSERM US14 cannot wholly guarantee the accuracy, precision nor the exhaustively of the information available on the website. The information available on the website is non-contractual, and can be changed at any time.
Information provided by Orphanet is not intended to replace professional health care. Only medical professionals are authorised to give medical advice.
The information provided in Orphanet’s encyclopaedia is based on published scientific articles. Disease profiles are expert-authored and peer-reviewed texts. These general texts may not apply to specific cases, due to the extensive variability of disease expression. Some information may appear shocking. It is of the utmost importance to check if the provided information is relevant or not to a specific case.
Information in Orphanet is updated on a regular basis. It may happen that new discoveries are made in between updates and do not yet appear in the disease profile. The date of the last update is always indicated. Professionals are encouraged to always consult the most recent publications before making any decisions based on the information provided.
Orphanet cannot be held responsible for harmful, truncated or erroneous use of any information found in the Orphanet database.
Not all rare diseases are indexed by their clinical signs in Orphanet at the moment. As Orphanet only covers rare diseases, this function cannot be used to make a differential diagnosis with common diseases, which should be considered first when making a diagnosis. The clinician using the information provided in Orphanet is solely responsible for the diagnosis made.
The classifications are produced using scientific publications and/or expert opinion. The classifications are updated on a regular basis, and new classifications are added when available. Orphanet cannot guarantee the exhaustivity of these classifications.
Information concerning expert resources is collected on a national level in participating countries. The database cannot be considered to be exhaustive. If an expert centre, an expert laboratory, a professional, a research project, a clinical trial, a registry, a patient organisation or an institution is not listed for a certain region or country, this could be because Orphanet has not yet identified this information, or because the person in charge has refused to be listed in Orphanet or has not sent back the form they received to fill in. It is also possible that no expert centre, expert laboratory, professional, research project, clinical trial, registry, patient organisation or institution exists for the zone or the disease in question. Not all rare diseases have specialised resources at the present time.
In no circumstance should the listed expert centres be considered to be the only centres suitable for diagnosis and treatment. These centres are intended to provide an expert opinion when needed.
In no circumstance should the listed expert centres be considered to be the only centres suitable for diagnosis and treatment. These centres are intended to provide an expert opinion when needed.
Data Confidentiality
The Orphanet web portal only contains data submitted voluntarily or recorded with the consent of those concerned. This applies to all email addresses and/or nominative data recorded, except the IP addresses of visitors to the site.
These IP addresses are automatically recorded by our IT system in server logs and by the company Google Inc.’s IT system. The IP addresses of our visitors, as well as their connections and information concerning their browsers, are collected by the company Google Inc. and are processed by servers in the USA and are likely to be shared with or communicated to third parties charged with processing this data for Google Inc.: these third parties could be situated outside of the European Union.
For information concerning the conservation of data collected by our web traffic tool, Google Analytics, please consult the Google Inc.’s privacy policy.
Site use
Use of the site is limited to personal use only. Orphanet data are available to download at orphadata.org.
Access to the site can be interrupted at any moment, without forewarning, especially in the case of force majeure, maintenance, or if INSERM US14 decides to suspend or stop the publication of this service. The provision of this service is therefore limited to a best effort undertaking.
Intellectual Property
The INSERM holds all intellectual property rights concerning the structure of the database, the format of the website, the logo and copyright, as well as the data and information on the site (content, texts, classifications, nomenclatures, and press statements).
No element or part of the site (including, but not limited to, the database and the information contained within) can be copied, translated, reproduced, exploited, published, electronically stocked or redistributed for commercial use without prior written consent.
Large extraction of data from orphadata.org for use in another information system is allowed for any non-commercial use.
However, INSERM US14allows the user to reproduce all or part of the site’s content, in one saved or printed copy. This right applies strictly to personal, private and non-collective use of the material.
Non-profit organisations are authorised to copy and distribute information from the site, as long as this information is neither modified nor sold. In addition to this, the terms of the intellectual property rights and the source of the information must be provided.
The appropriate form when quoting Orphanet is:
Orphanet: an online rare disease and orphan drug data base. Copyright, INSERM 1997. Available on http://www.orpha.net. Accessed (date accessed).
The appropriate form when quoting an Orphanet text is: Author(s). “Name of disease”. Orphanet Encyclopaedia, Month, year, URL address.
Rights to access, modify and delete information
In accordance with the law N° 78-17, “Informatique et Libertés” (“Information Technology and Freedoms”) of 6th January 1978, personal data collected by Orphanet on the website is declared to the CNIL, and recorded in dossier N° 756532.
In accordance with the law N° 78-17, “Informatique et Libertés” (“Information Technology and Freedoms”) of 6th January 1978, you have the right to access, rectify, modify, oppose or delete any data concerning you. You can exercise this right by contacting us using our contact form, or by writing to: Orphanet US 14, 96 rue Didot, 75014 Paris, France. We will check your identity before we make the requested changes.
Links
The website contains links to other partner or third-party websites. These sites are expert validated before online publication. However, INSERM US14 has no way of checking these sites daily, and cannot offer any guarantee concerning these sites in respect to the current laws and rules in vigour.
Modifications
INSERM US14 reserves the right to change, without forewarning, the present terms of use of the website www.orpha.net
Creating a link to a page on the Orphanet portal
Links to the home page or one of the Orphanet web pages are authorised:
providing that these links are not used for commercial or advertisement purposes providing that the name of the site (Orphanet), or an equivalent description of the portal, is clearly indicated on the link or next to it. providing that the authors of the link have informed INSERM US14 prior to the publication of the link This authorisation does not apply to websites publishing information of an illegal nature, be it violent, polemic, pornographic, racist, or bearing prejudice to the sensitivity of the majority.
Creating a link to a document published on the site
All direct or embedded links to a document other than a webpage, notwithstanding their form or content, are prohibited, unless the express authorisation of the editors of the portal Orphanet has been given.
This includes in particular, but not exclusively, all documents in a graphic format (such as .jpg, .gif, .png), all multimedia or animated documents (such as .avi, .mov, .wmv, .flv, .swf, .ppt, .pps), all text or word-processed documents (such as .txt, .doc, .docx, .rtf, .xls, .pdf), as well as any other document which cannot be viewed using a standard internet browser. We therefore recommend that you create links towards the Orphanet web pages containing the links towards these documents, instead of creating links directly to these documents.
Inclusion and using frames
Any use or reproduction, even in part, of one of the elements of the Orphanet web portal on a third-party site using techniques described as ’inclusion’, frames, inlining, or any other technique of a similar nature, is formally prohibited.
Illegal Data
In conformity with the ’Loi pour pour la confiance dans l’économie numérique’ (’Law for confidence in the digital economy) of 21st June 2009, the Orphanet portal website allows any individual or visitor to signal any content likely to constitute the infractions mentioned in the 5th and 8th paragraph of article 24 of the law of 29th July 1881 concerning the liberty of the press and articles 227-23 and 227-24 of the Penal Code.
In order to signal such content, please contact us using the contact form, giving the URL of the content you deem to be illegal.
Responsibility
The editors and authors of the web portal Orphanet cannot be held responsible for errors and omissions made in the information published online, nor for the technical problems encountered on the website and on other websites you may be directed to through links on an Orphanet webpage, nor for the interpretation of information published on these sites, as well as the consequences of the use of this information.
Deleting cookies in your hard drive
You can delete cookies saved in your computer by using the following procedure depending on the browser you use.
Warning: this procedure will delete all the cookies used by the browser, including those used by other websites, which can lead to the loss of certain information or settings.
Instructions for Internet Explorer 8 (Windows):
click on ‘Tools’ in the menu select ‘Internet Options’ in the drop down menu click on the ‘General’ tab click on the ‘Delete’ button in the ‘History’ section select the ‘Cookies’ box and click on the ‘Delete’ button Instructions for Mozilla Firefox:
click on ‘Tools’ in the menu select ‘Erase my traces…’ in the drop down menu in the dialogue box, select ‘Cookies’ then click on the ‘Erase my traces now’ button
Use of cookies on the portal website
Browsing the Orphanet portal website can lead to the use of a persistent cookie (saved on your computer’s hard drive). These cookies have not been devised to collect personal information; they are uniquely intended to ease browsing of the site.
For reasons due to the technology used by one of our contractors, a session cookie may be used when visiting our website in order to make statistical analyses and to record site traffic. If you wish, you can disactivate this cookie by changing the settings of your internet browser. In accordance with article 8.1 of the terms of use of the Google Analytics service, we draw your attention to the following declaration:
“This website uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses “cookies”, which are text files placed on your computer, to help the website analyze how users use the site. The information generated by the cookie about your use of the website (including your IP address) will be transmitted to and stored by Google on servers in the United States . Google will use this information for the purpose of evaluating your use of the website, compiling reports on website activity for website operators and providing other services relating to website activity and internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google's behalf. Google will not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on your browser, however please note that if you do this you may not be able to use the full functionality of this website. By using this website, you consent to the processing of data about you by Google in the manner and for the purposes set out above.”
