After logging in, you will be taken to the Genetic Information Request Form. The top of the page includes the email address and service name of the requester and the Genetic Service Information held. If any of this information appears incorrect and needs updating, contact the NCRAS administrator, [email protected]. Family (Proband) number/reference should be input and a Requesting Consultant must be chosen from the dropdown list. Both are mandatory fields, as indicated throughout the form by an asterisk.
Making a request
If the requesting consultant’s name does not appear in the dropdown list, use the ‘Other’ option and type the consultant’s name into the free text box which will appear below the Requesting Consultant field. If a consultant is not chosen from the dropdown list, or if ‘Other’ is selected and no name is entered into the text box, the request will not be submitted and an error will appear stating ‘Please choose or provide a consultant’. If ‘Other’ is selected and text is entered into the text box which appears, but then a consultant name is chosen from the dropdown to replace the ‘Other’ choice without removing the text, the same error will appear.
If a genetics service makes frequent use of the ‘Other’ option, this can be audited to identify whether a consultant should be added to the dropdown list. Please contact the Registration Lead or NDRS Programmes Manager if a consultant needs to be added to or removed from the dropdown list for your Service.
The image below shows the top of the genetic information request form with requested by and genetic service information, including mandatory field 'Family (Proband) number/reference' and 'Requesting Consultant'. Error alert shown when ‘Other’ Requesting Consultant is chosen without entering a name into the text box:
The remainder of the request form is where patient demographics and any known cancer details can be populated.
The mandatory fields which must be populated are:
- date of birth
- vital Status
Date of birth, date of death, and date of diagnosis fields can be recorded as a full date, a month range within a specified year, a year range, or a range between two specific dates. Date ranges for all date fields can be given by including a space between two dates.
Date format help is available beside all date fields: the more precise and accurate the provided dates, the greater the likelihood that a match will be found.
The Encore database cannot search for dates of birth prior to 1880 and matches for old records tend to be less common and, if found, may be less detailed.
The image below shows the date format help screen - more specific accurate dates increases the likelihood of a patient match.
If you attempt to submit a genetic request which does not include a mandatory field or for a living patient without uploading a consent form, the request will not be submitted and any missing fields will be highlighted in red with a note that they can’t be blank or that a consent form must be uploaded.
The image below shows an example of mandatory fields such as sex and vital status. Requests with missing mandatory fields will not be submitted and missing fields will be highlighted in red text with a comment beneath:
For patients with Vital Status Alive, a consent form signed by the patient or a relative with legal Power of Attorney must be uploaded by clicking Browse and selecting the appropriate PDF. Consent forms must be in PDF format and the check box must be ticked to indicate a signed consent form has been provided. Proof of power of attorney must also be included in the PDF where a living patient has not signed the consent form themselves.
Consent and power of attorney forms will be stored and regular audits will be carried out to ensure organisations comply with data regulations.
Submitting genetics services have legal responsibility for ensuring data compliance by providing appropriately signed consent and power of attorney forms. Any genetics service which fails to supply signed consent and power of attorney forms may be liable to have their access to the portal revoked.
The image below shows the 'Patient Information' fields for living patients and the consent form upload and check box.
When Vital Status Deceased is chosen from the dropdown menu, a Date of death field will appear instead of the consent form field. Deceased patients on requests who appear alive on NHS Summary Care Record tracing will be returned unactioned with a response comment that the patient is alive on tracing. A new request will need to be submitted with either a signed consent form if the patient is living or with proof of death emailed securely to [email protected] beforehand. A note in the comment box that proof of death has been emailed should be included to ensure appropriate return.
The image below shows the 'Patient Information' fields for deceased patients which includes the 'Date of death' field. Whilst the 'Date of death' is not mandatory, it will help with a positive result if completed.
A traceable strength bar at the bottom of the page updates as fields are populated to indicate the likelihood – low or good – that a patient can be traced or a match identified on Encore. A valid NHS number greatly increases the chance of a positive match: including an NHS number is the gold standard to identify the correct patient.
A low traceable strength is when only mandatory fields Surname, Forename, Sex, and Date of birth are completed for a deceased patient with suggested fields to populate to improve traceable strength.
A good traceable strength is when NHS number is populated in addition to Surname, Forename, Sex, and Date of birth for a living patient. A consent form would need to be provided before submitting.
If submitting requests for multiple family members, it can be helpful to include in the comments box the family/proband or genetic request reference number (provided on the submission confirmation page pictured below) for requests for other family members. Correlating surnames and addresses for family members with a cancer diagnosis can help confirm a potential match where patients have married or moved if other information is inaccurate or not supplied, such as providing a current address for a patient when they were diagnosed while living with or close to family.
Submitting a request
Review all fields carefully, because requests cannot be amended once submitted. After clicking submit, the following page will confirm the request has been submitted and will be completed within ten working days. It is not possible to flag requests as urgent, so please ensure when submitting genetic requests for cancer diagnosis confirmation that you have factored in the ten working days response time.
The below image shows the genetic information request submitted confirmation screen and example reference ID: