The DECIPHER community is a network of academic centres of Clinical Genetics. Each contributing centre is affiliated both to a hospital, as the local/regional Clinical Genetics Service and to the local University Department of Human/Clinical Genetics.
Each centre has at least one project in DECIPHER and is represented by a minimum of:
- A clinical coordinator, who is an experienced clinician
- A senior lab scientist or a lab coordinator
All clinicians and lab scientists representing the centre should be members of their respective professional bodies, for example:
- British Society for Genetic Medicine (BSGM)
- European Society of Human Genetics (ESHG)
- American Society of Human Genetics (ASHG)
By joining the DECIPHER community your project will be able to deposit and share your patient genotype and phenotype data, and access matchmaking tools and aids for pathogenicity assessment.
Membership Criteria – Projects
Please ensure your project fulfils the following criteria for joining DECIPHER.
- The project is part of an academic centre affiliated to a hospital which oversees the treatment of patients with genetic disorders.
- This project will be run from a department that is also affiliated to a local University department of Human/Clinical Genetics.
- The project is led by a senior clinician who works in the above hospital in the treatment and care of patients with genetic disorders.
- The lab scientists and the clinicians who will form part of your project are members of their respective professional bodies.
- It is your intention to submit consented patient data (phenotype-linked variant data) to DECIPHER for the purposes of sharing and collaboration with other DECIPHER members.
If your project meets these criteria, please complete a Join as a new project form. Please include details of at least one senior clinician and one senior lab scientist, and any other individuals for whom accounts are needed.
Joining – Individual members
Each individual who will be entering patient data (or will need to read patient data before it is consented for open-access release) will need their own DECIPHER account.
It is not necessary to join DECIPHER to find and read open-access patient data.
If you are working for a project which is already using DECIPHER and need an account, please complete the Join an established project form.The DECIPHER team will pass your application on to the lead clinician in your project; once they approve your application, an account will be created for you.
Please use your institutional email address (associated with the hospital or research centre you work for), and not a personal email address. You will need this email address to log in, and you will receive emails from DECIPHER from time to time which may require action.
Principles of collaboration:
- Any publication which refers to or includes meta-analysis of data contained in the DECIPHER database should acknowledge both DECIPHER including the URL https://decipher.sanger.ac.uk/ and the publicationDECIPHER: 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).
- For any publication concerning a single chromosomal locus or protein, where one or more patients have been ascertained through DECIPHER, DECIPHER should be acknowledged in the paper by reference to the url https://decipher.sanger.ac.uk/ and the 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). Co-authorship should be offered to the clinical geneticist/cytogeneticist from the participating centre(s) responsible for the evaluation of the phenotype/interpretation of the cytogenetic findings in the patient(s) concerned. If they are no longer working in that centre, co-authorship should be offered to the clinical geneticist/cytogeneticists with ongoing responsibility for the patient or a nominated substitute as agreed with the DECIPHER Lead(s) for the centre.