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Access data

Information about how to access more detailed national data sets.

Data are collected for the UK Transplant Registry (UKTR) through a series of electronic and paper ‘forms’. Data are submitted by NHS Blood and Transplant (NHSBT) and hospital staff including Specialist Nurses for Organ Donation, National Organ Retrieval Service personnel, transplant surgeons, recipient transplant coordinators and other hospital staff providing transplant follow-up information. Current versions of data collection forms can be viewed directly from the NHSBT document system.

NHSBT has a policy about access to data from the UKTR through the Statistics and Clinical Audit group
Visit the Data Access Policy 

Five standard transplant datasets are currently available:

  • Standard National Organ Transplant dataset
  • Standard National Liver Transplant dataset
  • Standard National Pancreas Transplant dataset
  • Standard National Kidney Transplant dataset
  • Standard National Cornea Transplant dataset

Download the Data Application Forms

The Potential Donor Audit dataset form can be found at the bottom of the page

Standard National Organ Transplant dataset

The contents of the standard national organ transplant dataset are currently limited to the following:

  • All organ transplants 1995 - 2015 (kidney, liver, pancreas (inc SPK), intestine, heart, lung, multi-organ)
  • Donor characteristics – type (living, DBD, DCD), age group, sex, cause of death
  • Recipient characteristics – age group, sex, primary diagnosis
  • Transplant information – year, organ(s) transplanted, transplant number, cold ischaemia time, HLA mismatch (where appropriate), urgency status of recipient (where appropriate)
  • Graft and patient survival times and censoring indicators (as appropriate for each organ)
  • Note that some data are missing and will be indicated clearly.

Standard National Liver Transplant dataset

The contents of the standard national liver transplant dataset, which must be requested using an application for data form, currently include the following information:

  • All liver transplants performed in the UK
  • Donor characteristics - including type (living, DBD, DCD), age group, blood group, cause of death
  • Recipient characteristics - including age group, blood group, primary liver disease, test results prior to transplant
  • Transplant information - including year, transplant type, transplant number, cold ischaemia time, urgency status of recipient
  • Graft and patient survival times and censoring indicators
  • Follow up information - including complications, number of readmissions, immunosuppression, liver function tests
  • Note that some data are missing and will be indicated clearly.

Standard National Pancreas Transplant dataset

The contents of the standard pancreas transplant dataset, which must be requested using an application for data form, currently include the following information:

• All whole pancreas transplants performed in the UK
• Donor characteristics - including type (DBD, DCD), age group, blood group, cause of death, donor history
• Recipient characteristics - including age group, blood group, diabetes cause, dialysis status
• Transplant information - including year, transplant type, whole pancreas transplant number, cold ischaemia time, sensitisation at transplant
• Graft and patient survival times and censoring indicators (kidney graft survival provided separately for simultaneous kidney pancreas transplant patients)
• Follow up information - including rejections, renal disease, insulin independence, serum creatinine
• Note that some data are missing and will be indicated clearly.

Standard National Kidney Transplant dataset

The contents of the standard kidney transplant dataset, which must be requested using an application for data form, currently include the following information:

• All kidney transplants performed in the UK
• Donor characteristics - including type (DBD, DCD and Living), age group, blood group, cause of death, donor history
• Recipient characteristics - including age group, blood group, dialysis status, sensitisation at registration
• Transplant information - including year, transplant type, transplant number, cold ischaemia time, sensitisation at transplant
• Graft and patient survival times and censoring indicators
• Follow up information - including delayed graft function, serum creatinine and eGFR
• Note that some data are missing and will be indicated clearly.

Standard National Cornea Transplant dataset

The contents of the standard national cornea transplant dataset are currently limited to the following:

  • All corneal transplants 2000 - 2015
  • Donor characteristics - type (DBD, DCD, Tissue only), whether solid organs donated, age group, sex, cause of death
  • Recipient characteristics – age group, sex, diagnosis for corneal transplant
  • Transplant information – year, type of graft, graft number in operated eye, number of previous grafts in fellow eye, LogMAR acuity at transplant and one year
  • Graft survival time and censoring indicator
  • Note that some data are missing and will be indicated clearly.

If you wish to apply for access to a more detailed national data set then you can use the forms provided below and return them to NHSBT as indicated. Relevant Research Groups meet regularly to review and approve data applications to ensure appropriate data governance.

Download the Data Application Forms

When completing your data application please ensure your request is clearly detailed including time periods, inclusion criteria and every data item relevant to your research and needed to perform the stated analyses. Due to time constraints in preparing data sets the task can only be undertaken once per application. Additional requests for data items or changes in the cohort after the data application has been completed will not be undertaken.

Once your application form is complete please email the form to statistical.enquiries@nhsbt.nhs.uk