PNH Research Tissue Bank
Overview
The PNH Research Tissue Bank (RTB) is a collection of tissue samples and health-related information from patients with paroxysmal nocturnal haemoglobinuria (PNH) and related conditions.
The tissue bank is designed to support research aimed at improving understanding of these rare diseases and developing better treatments. To help researchers understand how these conditions differ from normal health, samples from healthy volunteers are also collected for comparison.
How samples and data are collected
Patients aged 16 and over who are under the care of the Leeds centre of the National PNH Service may be invited to take part in the RTB by a member of their clinical team.
If you are interested, you will be given a patient information sheet and have the opportunity to discuss the research with a trained member of staff before deciding whether to take part.
If you provide consent:
- Samples will be taken at the same time as your routine clinical tests
- These may include blood samples or mouth swabs
- Any leftover tissue from routine diagnostic tests may also be used
You may also be asked to provide additional samples at future follow-up appointments.
You are free to decline any request for further samples at any time. Participation is entirely voluntary.
How samples are used
Researchers from within Leeds and other organisations may apply to use samples from the RTB to support approved research studies.
All applications are reviewed by the PNH RTB Committee, which includes a patient representative. The committee ensures that:
- The research has scientific merit
- It meets ethical and consent requirements
- The requested samples are available
How your samples and data are stored
We work in partnership with our research team at the University of Leeds to run the tissue bank. Tissue samples are stored securely within University of Leeds facilities located at St James’s Hospital, Leeds. Data is held on a secure database.
In this research study we will collect some information from your hospital notes. We will only use information that we need for the research study. Information such as your name and address will not be passed to researchers.
Both samples and data are stored in a coded (linked anonymised) format, meaning that your identity is protected and cannot be directly identified by researchers.
The samples you provide will be stored in a way that ensures they remain usable in research for many years. Therefore, at the end of the study, your samples and data may be stored indefinitely unless an ethics committee decides otherwise, or you choose to withdraw from the tissue bank.
We will make sure no-one can work out who you are from the reports we write.
For more information on how patient data is used in research, click here.
PNH RTB Research Projects
The RTB has supported eight major research projects, three of which are ongoing, spanning a broad range of laboratory research and resulting in several publications in leading international haematology journals. You can find further information here.
Further information
Additional information and related forms can be accessed below:
Patient Information Sheet – provides detailed information about the study, including its purpose, what participation involves, and how your data will be used.
Change of Details Form – update your personal details.
Health-related Findings Opt-In Form – choose to receive health-related findings.
Health-related Findings Opt-Out Form – choose not to receive health-related findings.
Withdrawal Form – use this form if you wish to withdraw from the study or change your consent preferences.
If you have any questions about the PNH Research Tissue Bank, please contact the PNH clinical team, who will be happy to help.