The primary purposes of the DECIPHER project are to:
- Increase medical and scientific knowledge about chromosomal microdeletions/duplications
- Improve medical care and genetic advice for individuals/families with submicroscopic chromosomal imbalance
- Facilitate research into the study of genes which affect human development and health
The Consortium anticipates that consented data generated from the project will be used by others, such as required for developing new analytical methods, in understanding patterns of polymorphism and in refining critical intervals to map genes involved in specific
phenotypes and diseases.
Authors who use data from the project must acknowledge DECIPHER using the following wording “This study makes use of data generated by the DECIPHER community. A full list of centres who contributed to the generation of the data is available from http://decipher.sanger.ac.uk and via email from firstname.lastname@example.org. Funding for the project was provided by the Wellcome Trust.”
Please also cite the following publication: DECIPHER: Database of Chromosomal Imbalance and Phenotype in Humans using Ensembl Resources. Firth, H.V. et al (2009). Am.J.Hum.Genet 84, 524-533 (DOI: dx.doi.org/10/1016/j.ajhg.2009.03.010)
The Recipient shall also declare in any published work that those who carried out the original analysis and collection of the Data bear no responsibility for the further analysis or interpretation of it by the Recipient or its Registered Users.
The Recipient shall also contact the clinical coordinator for the project/participating centre that entered the data on any individual who they wish to specifically include in their report (whether identified or not) and offer appropriate agreed recognition of their contribution, which may include co-authorship if the magnitude of the contribution warrants it to at least one representative from the project/participating centre (possibly the member who submitted the patient data). Contact and collaboration requests may be made by email to email@example.com
The DECIPHER consortium provides these data in good faith as a research tool, but without verifying the accuracy, clinical validity or utility of the data. The DECIPHER consortium, makes no warranty, express or implied, nor assumes any legal liability or responsibility for any purpose for which the data are used.
The DECIPHER administrators reserve the right to vary these terms and conditions as necessary or thought desirable in the public interest or to protect the individuals whose information is included in the databank, or for any other reason.
Whilst the DECIPHER administrators will take reasonable steps within the resources available to them to protect the privacy of patients and participating centres and the quality of the data, they can accept no legal liability for the use or misuse of the information.
For information on the Wellcome Sanger Institute data sharing policy, please see http://www.sanger.ac.uk/about/who-we-are/policies/open-access-science.
Dr. Matthew HurlesThe Wellcome Sanger Institute
Wellcome Trust Genome Campus
Cambridge CB10 1SA
Tel: +44 (0) 1223 495377
Fax: +44 (0) 1223 494919