STX11base Mutation registry for
Familial haemophagocytic lymphohistiocytosis 4
The ImmunoDeficiency Mutation Databases (IDbases) and other Mutation Databases mainted at the Institute of Biomedical Technology (IBT) are maintained and provided as a public service for academic community.
Individuals submitting data to and using the mutation databases managed by the Institute of Biomedical Technology (IBT) should be aware of the following:
1. The IBT has a uniform policy of free and unrestricted access for academic community to all of the data records their databases contain. Scientists worldwide can access these records to plan experiments or publish any analysis or critique. Appropriate credit is given by citing the database. Instructions for citing are provided in each individual database.
2. The databases are intellectual property of the Institute of Biomedical Technology. Details are available for Copyright and Liability.
3. Corrections of errors and update of the records by authors are welcome and erroneous records may be removed from the next database release.
4. Submitters are advised that the information displayed on the Web sites maintained by the IBT is fully disclosed to the public. It is the responsibility of the submitters to ascertain that they have the right to submit the data. This applies also the appropriate consent from the patient and/or family.
5. Beyond limited editorial control and some internal integrity checks, the quality and accuracy of the record are the responsibility of the submitting author, not of the database. The databases will work with submitters and users of the database to achieve the best quality resource possible.
6. Data in IBT mutation databases may be shared with central repositories according to published Human Genome 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. We keep the confidentiality of the data relating to individual patients and visitors to the web site, including their identity. No data is collected that would allow identification of the patients for whom information is stored and distributed in the database. We do not share any information about database visitors with third parties. As database curators and owners we undertake to honour or exceed the legal requirements of medical/health information privacy that apply in Finland.