DECIPHER patient records
DECIPHER associates variants and phenotypes through individual patient records, each of which are connected to a particular depositing centre. DECIPHER itself cannot re-identify individuals, and technical and organisational measures are in place to safeguard data. These measures are reviewed and updated in line with evolving best practice.
On deposition, each patient record is given a DECIPHER Patient ID as a reference, which is shown on the website and forms part of the URL for the patient record (e.g. https://www.deciphergenomics.org/patient/283351 - note that URLs of the form https://decipher.sanger.ac.uk/patient/283351 continue to be supported). Each patient record also has an internal ID (e.g. a lab number), which is only displayed to users of the depositing centre. The internal ID allows the depositing centre (only) to link the record to an individual patient.
Through the DECIPHER platform it is possible to send a patient’s clinician a message to request further information about the patient, for example in the case where there is a potential patient match, or if a researcher is carrying out a functional study on the gene in which that patient’s variant is situated. Below we will describe in more detail the clinical and research utility of this notification system.