Legal & ethical permissions
The UK Kidney Association holds permissions and approvals to collect and use registry information for specified purposes, including clinical audit and research. These arrangements vary between registries and datasets. Any proposed use or sharing of information must fall within the relevant permissions and approvals.
Why different permissions are needed
Using patient information involves several separate requirements:
- Data protection law: organisations need a lawful basis to use personal information and must meet additional conditions when using health information.
- Confidentiality: confidential patient information is protected by a duty of confidentiality. Using it beyond individual care requires consent or another recognised legal justification.
- Research ethics: research must undergo the ethical review required for the proposed work.
Meeting one requirement does not remove the others. For example, research ethics approval does not by itself give an organisation permission to access patient information.
Dataset permissions
| Dataset | Level of identifiability | Confidentiality | Internal audit | Internal research | External research |
|---|---|---|---|---|---|
| CKD & KRT data | Pseudonymised | Section 251 | Yes | Yes | Yes |
| AKI laboratory alert data | Pseudonymised | Section 251 | Yes | Yes | Yes |
| Patient-reported data | Pseudonymised | Section 251 | Yes | Yes | Yes |
| Rare kidney disease data | Pseudonymised | Consent | Yes | Yes | Summary outputs |
Legal basis
All data are processed by the UKKA under Article 6(1)(f) of the UK GDPR — legitimate interests — and Article 9(2)(j), covering research and statistical purposes, alongside the requirements of the Data Protection Act 2018.
Individual-level identifiers may be shared for research projects with suitable permissions of their own, such as consent for a clinical trial.
Find out how to apply to use registry data
Understanding Section 251 support
Section 251 of the NHS Act 2006 provides a legal framework for specified uses of confidential patient information without individual consent in England and Wales. Support is subject to conditions covering the approved activities and use of information. Organisations must continue to meet data protection requirements. Separate arrangements apply in Scotland and Northern Ireland.
Permissions and approvals
The UK Renal Registry (UKRR) uses information from kidney centres and hospital laboratories to assess care against national standards and identify opportunities for improvement.
Its Section 251 support covers specified collection, processing and linkage of confidential patient information for clinical audit, subject to the conditions of its approval.
Non-research approval reference: 16/CAG/0153
The UKRR has separate Section 251 support for using information in its research database, alongside research ethics approval.
Researchers must apply to use UKRR data. Each proposed project is assessed to establish whether it falls within the registry’s existing approvals and whether additional permissions are required.
Research confidentiality approval reference: 16/CAG/0064
RaDaR collects and uses information under its approved research protocol and participation arrangements.
People who can consent for themselves receive information about the registry before deciding whether to participate. Specific procedures apply to children and adults who cannot consent for themselves.
The protocol and participant documents explain these arrangements and how information may be used for research.
RaDaR protocol, participant information and consent documents
Patient choices and opt-outs
Consent, withdrawal and opt-out arrangements differ between registries and purposes. The National Data Opt-Out in England and objections made directly to the UKRR are separate arrangements. Patients can read our explanation of how their information is used and the choices available to them. Healthcare organisations submitting information must follow the applicable UKRR policy and submission guidance.