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.

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.

If you have any questions about the PNH Research Tissue Bank, please contact the PNH clinical team, who will be happy to help.