To ensure the secure use of data from the Register, confidentiality and copyright regulations have been outlined. The following topics are covered by the ECARUCA regulations:

• Accounts
• Patient data
• Request for detailed data
• Use, confidentiality and publication
• Legal requirements
• Copyright
• Disclaimers

 Accounts

To gain access to the Register, a prospective user should apply for an account. An account can be provided after approval of the Project Management Board.

 Patient data

Patient information will be provided anonymously. Cytogenetic and clinical data will be available on this website for account holders only.

 Request for detailed data

Detailed data of the Register will be available on request. Requests for additional clinical information will be handled by the clinical data manager. In order to prevent misuse of the data and to ensure copyright regulations, requests will need approval by the Project Management Board if the data are to be used for research or publishing purposes. The centre that originally submitted the data will be consulted on the request, and has to give permission prior to the use of the data in any publication.

 Use, confidentiality and publication

User is only allowed to use the data from the website for professional purposes. User has the obligation to keep the data from the website confidential and not to provide data from the website to third parties without permission of the Project Management Board.

Publication of the data from the website or publications as a results of the use of the data from the website is only allowed with permission of the Project Management Board. After approval, please refer to the ECARUCA database (www.ecaruca.net) in your publication and cite the article by I. Feenstra et al. European Journal of Medical Genetics, Jul-Aug 2006, 49(4): 279-91, which describes the database. You can view this article in PubMed.

 Legal requirements

The appropriate authorities have been notified of the ECARUCA project and its Register, in accordance with the Dutch Law of Protection of Personal Information (Wet Bescherming Persoonsgegevens).

 Copyright

All materials on this web site are the copyright of ECARUCA or are reproduced with permission from other copyright owners. All rights are reserved. All clinical, cytogenetic and resource data that are collected within the Register will be available free of charge to all participants provided that confidentiality and copyright regulations are guaranteed. The materials on this web site may be retrieved and downloaded solely for personal use. Without the prior written permission of ECARUCA, no data may be copied, published, broadcast or otherwise distributed.

 Disclaimers

ECARUCA does not make warranties of any kind concerning the accuracy and suitability of the information from ECARUCA or third parties contained on this web site. ECARUCA does not accept responsibility or liability for the accuracy and suitability of data from the website (data mentioned by ECARUCA or third parties), the use of data from this website and any claims, damages, expenses and losses as a results of the use of the data from this website by a third party.

Links to other web sites are provided by ECARUCA in good faith and for information only. ECARUCA does not accept responsibility for the information contained in any website which is linked to this website.