The European Association for Haemophilia and Allied Disorders (EAHAD) Coagulation Factor Mutation Databases are maintained and provided as a public service for the clinical, diagnostic and coagulation factor research communities. All individuals accessing and using the information contained in these mutation databases managed by EAHAD explicitly agree to abide by the following:
1. EAHAD has a uniform policy of free and unrestricted access to all the online databases. Appropriate credit should be given if these records are used to plan experiments or publish any analysis or critique by citing the database. Instructions for citing are provided in each individual database.
2. The databases are the intellectual property of EAHAD. Details are available for Copyright and Liability. Copying, downloading, storing, publishing or (re-)distribution of the contents of a database, in whole or in part is forbidden without prior written permission of the relevant curator.
3. EAHAD has made all reasonable efforts to ensure that the information contained in the databases and displayed on the web pages are of high quality, however the databases may contain errors. EAHAD make no warranty, express or implied, as to the accuracy or that the information is fit for a particular purpose, and will not be held responsible for any consequences arising out of any inaccuracies or omissions. It is the responsibility of those using the data to ensure its appropriate use and validity. Suggestions of errors and update of records are welcome. Erroneous records will be removed/corrected as soon as practicably possible.
4. Submitters are advised that the information displayed on the Web sites maintained by EAHAD is fully disclosed to the public. It is the responsibility of the submitters to ascertain that they have the right to submit the data. It is the responsibility of the submitter to ensure that appropriate consent from the patient and/or legal representative has been obtained.
5. Beyond limited editorial control and some integrity checks, the quality and accuracy of the record is the responsibility of the submitter, not of the database. The database curators will work with submitters and users of the database to achieve the best quality resource possible.
6. Data in EAHAD databases may be shared with central repositories according to published Human Variation Society Guidelines.
7. The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician.
8. No information is presented in the online databases that identifies individuals whose data is stored and distributed in the database. Users, registered or unregistered, agree not to make any attempt to determine the identity of any individual of whom data are present in the online databases. In case information identifying an individual is observed, curators should be notified immediately, so that the identifiable data elements can be removed. We do not share any information about database visitors with third parties. As database curators and owners we undertake to honour the legal requirements of medical/health information and data protection that apply in the EU1.
9. As a result of the introduction of the 2018 EU General Data Protection Regulation (GDPR), we have examined the data held by our databases. With the exception noted below (item A), all data referring to individual cases with variants in coagulation factor genes featured in EAHAD-DB databases is pseudo-anonymised. (A) For some unpublished historical data supplied directly by laboratories carrying out genetic diagnoses, patient IDs were supplied to EAHAD-DB. All these patient IDs have been removed from the online DB files held on UCL servers, nor are they stored on any PC connected to the internet. Such data is held as an ultimate backup on encrypted USB sticks held separately at two locations outside UCL. As database curators and owners we undertake to honour the legal requirements of medical/health information and data protection that apply in the EU1.
1. GDPR: Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation)