Welcome, Home Referencelist Caselist
Welcome to the NSEuroNet database About...
Information on Patient Consent

For our privacy protection and patient consent policy we have adhered to standards recommended by Povey et al.: Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases (LSDBs) , Hum Mutat 2010; 31 (11) 1179–1184.

Our Policy

Published data:
Published patients with mutations or variants in any of the known RASopathy genes have already been entered into the database. In this case only the mutation information was entered as most papers do not include clinical details for each individual patient.
Once a previously published patient is entered our record of that patient will be erased (please remember to note if your patient has been published in the appropriate section of the data entry form.

Research data and diagnostic data with permission for publication:
This information can be added without further patient consent. This database is completely anonymous and no identifiable information, such as date of birth, name or address, is entered. Each case entered receives a unique case number that is created by the system, which the submitter should note in the patients file. Using this number, future changes of the information or deletion of the dataset is possible, but only by the submitter. Each submitter can only see, edit or delete his/her own cases. Only reviewers are able to see all cases. Individual data sets will not appear to users of the database.

Diagnostic data without permission for publication:
For this database no individual datasets can be seen by users of the database, except for genotypes that have only one single entry. The unique case number is not displayed to the user. Since no identifiable information, like the date of birth, name or address, is entered, our database is completely anonymous and only the submitter knows the identity of the patient. Thus patient consent is not strictly necessary. However, we would recommend that informed consent is sought from all patients without permission for publication. For this purpose we recommend a downloadable form as suggested by Povey et al (2010).

Consent form (PFD): English | Deutsch
Consent form (Word): English | Deutsch

Please also read our General Information and our Database Policy. Information on how to contact the curator can be found in the Impressum / Legal Information contact sections.