A step-by-step guide to recruitment and data entry

Preliminary steps:

  • Ensure that the person who will enter the data into RaDaR has a RaDaR login and knows the patient’s NHS/CHI/HSC number and their diagnosis.
    • To request a login to RaDaR, please email the following to radar@ukkidney.org:
      • the delegation log (with the relevant person's name on it, signed off by the site PI to the appropriate level of access/responsibility)
      • a copy of the new user's CV
      • a copy of the new user's up-to-date GCP certification
  • Review the Inclusion-Exclusion Criteria and the list of diagnoses / conditions 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.
  • Check which invitation letter, information sheet and consent form should be issued to the potential participant.
    • There are different forms for children (0-15), adults with capacity and adults who lack capacity.
  • To ensure that data flows automatically into RaDaR, if a patient consents to join 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, much of 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 the "Condition-specific data entry instructions" section below.

Process for recruiting a patient to RaDaR:

  1. Provide the patient and/or their parent/guardian/consultee/relative/attorney with the appropriate invitation letter, information sheet(s) and consent form.
  2. Where consent is given, copies of consent forms must be retained in the local site file.
  3. If consent is given, log in to the RaDaR database at: https://nww.radar.nhs.uk
  4. Go to the Patients tab and click on Recruit Patient. You will be asked for:
    • First name
    • Last name
    • Date of birth
    • Email address - please enter the patient's email address (or parent/guardian as appropriate) unless the patient does not have one or has refused to provide one. We use email to contact patients with opportunities to participate in research projects, including clinical trials for new treatments. If a patient's email address is not provided, the patient may miss out on these opportunities.
    • Gender
    • Patient number (NHS/CHI/HSC)
  5. Enter the requested details and click Search.
    • If the patient has been recruited to RaDaR already, their record will come up. If the patient has changed their name since they were recruited, or other key information that you enter does not match what is already in RaDaR, you will need to contact the RaDaR team for help.
    • If the patient has not previously been recruited to RaDaR, fill in the required demographic information (anything with a red asterisk).
  6. Enter the appropriate cohort (Rare Disease Group/diagnosis).
    • Patients can be eligible for more than one cohort. Please add the patient to all of the cohorts that they are eligible for. However, you can only add one cohort at a time, so when you are first recruiting a patient, please choose one cohort and then add the others later.
  7. Enter the hospital at which the patient is being consented (or re-consented if the patient has been recruited in the past). If you recruit patients at more than one hospital, please check that the correct hospital is selected from the drop-down list.
  8. Confirm that the patient has been consented by selecting the applicable Consent check box. For patients who are new to RaDaR, this will automatically store their consent on their record.
    • If the patient was already in RaDaR, their new consent will not be stored at this stage. This will need to be manually entered once steps 9 and 10 have been completed. This is particularly important for patients who were originally recruited as children and are now consenting as adults for the first time.
  9. Click Fill Diagnosis. Here, you will be asked for information about the patient's diagnosis. While only a few fields are required (marked with a red asterisk), please enter as much information as you can.
  10. Click Recruit Patient. The patient has now been added to RaDaR, and has been assigned a RaDaR ID.
  11. If the patient was already in RaDaR, please click on the Consent tab and add their new consent.
  12. As a minimum, please enter the following priority information for all new patients:
    • Evidence to support the diagnosis (e.g. biopsy/path report, genetic report, biochemistry - whichever is relevant to the diagnosis)
    • Lab results at the time of diagnosis (or 90 days either side) especially Serum Creatinine, eGFR, uACR, uPCR
    • Dialysis and/or transplant records where relevant
  13. Click on the tab with the cohort name on it (this tab will be green) to see the data entry instructions for that cohort.
    • Please enter as much of the requested information as you can.

Condition-specific data entry instructions

CMV data entry guide April 2025 (PDF)