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The MRC Clinical Trials Unit at UCL is committed to actively involving patients and the public in our trials. All our Patient and Public Involvement (PPI) work is overseen by our PPI Group, made up of MRC CTU staff alongside seven patient representatives, with a wide range of experience in different areas.
In this episode of the Trial Talk podcast, two members of the Unit’s PPI Group, Richard Stephens and Ian Newsome, discuss what PPI means to them; how they got involved as patient representatives in clinical research; and how the MRC CTU at UCL embeds PPI into our trials.
Resources:
• Our PPI group: www.mrcctu.ucl.ac.uk/patients-publi…our-ppi-group/
• PPI resources: www.mrcctu.ucl.ac.uk/patients-publi…ppi-resources/
• Testing Treatments: Better Research for Better Healthcare (book): www.ncbi.nlm.nih.gov/books/NBK66204/
For more information and to access the transcript: bit.ly/3KlKtak
For questions or feedback on the podcast series, message us at mrcctu.engage@ucl.ac.uk.
4
5/29/2024
Every year on 1st December, we mark World AIDS Day to show solidarity in the fight against HIV and AIDS, and to remember those who have sadly lost their lives.
Since the start of the global AIDS epidemic in the 1980s, researchers have made enormous progress towards preventing HIV transmission, and treating those who are living with HIV so that the virus remains suppressed. But while there have been marked improvements for adults, treatment coverage in children and adolescents is lagging behind.
In the second of our World AIDS Day episodes, we highlight the important role that young people living with HIV play in research, by shaping clinical trials to better serve the needs of their community.
This episode features Lungile Jafta, who works closely with young people through Penta’s youth engagement programmes, and Gugu, a former Youth Trials Board member from South Africa who is living with HIV.
1
11/30/2023
Octopus is a new clinical trial for people living with progressive multiple sclerosis (MS), which is designed and run by the MRC Clinical Trials Unit at UCL. Thanks to its multi-arm multi-stage platform design, Octopus has the potential to transform the way treatments for progressive MS are tested. The trial is now open in the UK and will be recruiting participants for the next few years.
The podcast mini-series will explore the trial from different perspectives by talking to neurologists, MS experts and people affected by MS.
In the final part, we explore the role of people affected by MS in the Octopus trial. Susan Scott, a pharmaceutical publications specialist and Octopus patient representative, shares her involvement in the trial and explains how PPI has benefited Octopus so far.
14
11/8/2023
Immunotherapy drugs fight cancer by helping the immune system recognise and attack cancer cells. These drugs have revolutionised cancer treatment over the last decade, improving survival for many people with different types of cancer.
However, researchers are still unsure of the best way to give immunotherapy, which can come with unpredictable side effects.
In this episode, Clinical Fellow Sophie Merrick discusses how the REFINE trial hopes to address this problem, by testing if giving immunotherapy less frequently can still treat the cancer effectively, whilst improving the quality of life for patients, reducing side effects and costs.
Further information is available on the REFINE study page at www.mrcctu.ac.uk
For questions or feedback on the series, message us at mrcctu.engage@ucl.ac.uk
For more information and to access the transcript: https://bit.ly/3DgIDE2
0
7/18/2023
Patient advocacy in the EURO EWING Consortium
389
10/15/2020