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.

4

11/30/2023

Agenda: 12:30-12:35 – Welcome and introduction of the TINs (Asha Recino, Therapeutic Innovations Networks Coordinator) 12:35-12:45 – Patient and Public Involvement (PPI) in Research - An introduction (Linda von Nerée, PPI Lead at NIHR Blood and Transplant Research Unit (BTRU) in Stem Cells and Immunotherapies at UCL) 12:45-12:55– PPI engagement and benefits in gene therapy research (Matthew Walker, Consultant Neurologist at the National Hospital for Neurology and Neurosurgery) 12:55 -13:05 – Patient experience and involvement in hemophilia gene therapy studies (Luke Pembroke, Gene Therapy Patient) 13:05 -13:15 – Patient involvement in stem cell and immunotherapies for blood cancer (Gillian Murphy, Patient & Public Research Panel Member, Blood and Transplant Research Unit at UCL) 13:15- 13:25 – PPI in pre-clinical regenerative medicine research (Nick Hamilton, NIHR Clinical Lecturer, UCL) https://www.ucl.ac.uk/therapeutic-innovation-networks/join-community/subscribe-tins-newsletter

90

4/30/2021