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Patient Led Research Hub

Our Latest News

New NHS workforce publication!

Wednesday October 15, 2025

We are delighted to share a new peer-reviewed publication exploring the how NHS Hospital Trusts support staff living with fluctuating, often invisible, long-term health conditions. This important work focused on understanding organisational barriers and enablers, but findings were validated and further developed through workshops with affected staff. Dr Sara Booth – an NHS consultant living with […]

We’re 10!

Thursday October 2, 2025

The PLRH celebrates its 10 year anniversary! Check our out a recap in our latest newsletter, and listen to our Medical Director, Dr Rona Smith, speak to That’s TV Cambridge: PLRH Director, Dr Rona Smith, talks to That’s TV

New NF1 publication!

Thursday August 28, 2025

We are delighted to share a new peer-reviewed publication exploring the healthcare experiences of NF1 families and healthcare providers. ‘Alone on our NF1 island’ was co-authored by Childhood Tumour Trust and Dr Shaowen Ju, and supported by the PLRH. The paper describes the unmet need for better care guidelines and NF1 education for both families […]

PLRH quarterly: July

Tuesday July 1, 2025

So far this year we’ve been focusing on developing RDRN, core grant applications, and planning future events. However, we’ve also seen an uptick in new research ideas – keep them coming!  Check out our latest newsletter for an update and sign up to our mailing list here.

Exploring Patient-Initiated Research

Thursday June 19, 2025

In 2024 we were contacted by the British Columbia Support for People and Patient-Oriented Research and Trials (BC SUPPORT) Unit – they were keen to understand how the PLRH supports patient-led research, as they aim to expand their own service. We were happy to be interviewed as part of their work to understand challenges and […]

PLRH quarterly: January

Thursday January 9, 2025

Happy 2025 everyone! We wish you a wonderful year ahead, and look forward to collaborating with many of you. Check out our latest newsletter for a recap of 2024 proposals and our newly launched Rare Disease Research Network! Sign up to our mailing list here.