Preliminary steps:
- Ensure that the person who will enter the data into RaDaR has a RaDaR login and knows the patient’s NHS/CHI number and their diagnosis.
- To provide a login to RaDaR, we need to see the delegation log with the relevant person's name on it, signed off by the site PI to the appropriate level of access/responsibility, and a copy of their CV and up-to-date GCP certification.
- Review the Inclusion-Exclusion Criteria and the list of diagnoses / conditions for the condition in question to ensure the patient is eligible for RaDaR.
- If you have any questions about the criteria or whether a specific patient fits within them, please check with your site PI and/or with the relevant Rare Disease Group lead.
- To ensure that data flows automatically into RaDaR, you must contact your local renal IT system administrator with the patient details and ask them to turn on a data feed from the renal system to the UK Kidney Association. This data feed is usually (but not always) known as a "PV feed".
- Switching on the automatic data feed will save a lot of time and effort. Without the data feed the patient's information will need to be entered manually.
- Check whether there are condition-specific data entry instructions for the condition that the patient has. (See "Condition-specific data entry instructions" section below)
Process for recruiting a patient to RaDaR:
-
Download the appropriate Patient Information Sheet(s) and give to the patient and/or their guardian.
-
Download the relevant consent forms. These should be printed with Hospital / Trust letterheads.
-
Obtain consent from the patient or their guardian. This can be done by post, face-to-face or via email where the site is set up for e-consent Electronic Consent | The UK Kidney Association
-
Copies of consent forms must be retained in the local site file.
-
Log in to the RaDaR database at: https://nww.radar.nhs.uk
-
Go to the Patients tab and click on Recruit Patient.
-
Enter the required details and click Search. Enter the patient’s details manually if their record is not found.
-
Select the appropriate Renal Unit and Cohort (Rare Disease Group/diagnosis).
-
Confirm that the patient has been consented by selecting the applicable Consent check box.
-
Click on the green Cohort tab to see the data entry instructions for that condition.
-
Fill in the Demographics, Primary Diagnosis and Consultant tabs as a minimum for all patients.
-
Fill in further information as requested in the Cohort tab and/or in the condition-specific data entry instructions.
Condition-specific data entry instructions
If there is any discepancy between the instructions below and the instructions on the Cohort tab in the RaDaR database, please get in touch to let us know. The instructions in RaDaR should be followed in preference to those in the documents below.