Data Sharing

Overview

The primary purposes of the DECIPHER project are to:

  1. Increase medical and scientific knowledge about genomic variation.
  2. Improve medical care and genetic advice for individuals/families with submicroscopic chromosomal imbalance and rare sequence variants.
  3. Facilitate research into the study of genes that affect human development and health in order to improve diagnosis, management and therapy of rare diseases.

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.

Data Access Agreement (DAA) for Research

Access to bulk data of genomic coordinates of genomic variants and associated phenotypes for research purposes may be obtained from DECIPHER and is subject to a Data Access Agreement, in which the user certifies that no attempt to identify individual patients will be undertaken. The same restrictions apply to the public data displayed on this website: no one is authorized to attempt to identify patients by any means.

To apply for access to bulk data for research, you will be required to complete the Data Access Agreement available here and to send it to the contact below with a short explanation of how the data will be used.

Data Display Agreement (DDA)

Consented DECIPHER data is available for presentation in a browser display and is subject to a Data Display Agreement, in which the user agrees to take all reasonable care to render bulk data download unfeasible and not to provide data mining access to the Data.

To apply for access to DECIPHER data for presentation in a browser display you will be required to complete the Data Display Agreement available here and to send it to the contact below with a short explanation of how the data will be used.

Publication Policy

Authors who use data from the project must acknowledge DECIPHER using the following wording “This study makes use of data generated by the DECIPHER Consortium. A full list of centres who contributed to the generation of the data is available from https://decipher.sanger.ac.uk/ and via email from decipher@sanger.ac.uk . Funding for the project was provided by the Wellcome Trust.”

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 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 details can be obtained by email to decipher@sanger.ac.uk

Disclaimer

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 Trust Sanger Institute data sharing policy, please see here.

Contact information

Dr. Matthew Hurles

The Wellcome Trust Sanger Institute
Wellcome Genome Campus
Hinxton
Cambridge CB10 1SA
UK

Tel: +44 (0) 1223 495377
Fax: +44 (0) 1223 494919
email: decipher@sanger.ac.uk

Further Information