PPIE video

Most of our rare disease research is conceived / co-led and co-authored by PPIE partners. 

To ensure effective PPIE is achieved, the Health and Social Care Research and Development department has created this informative video.
They also provide essential training to all wishing to use or be involved in PPIE.
Visit their website.

Watch nowHealth and Social Care Research and Development PPIE - Watch now

The RealiseD project will host a series of four-part webinars that will focus on key topics aimed at reshaping the landscape of clinical research for rare and ultra-rare diseases. Beyond informative, the sessions have been designed as a call to action for researchers, regulators, health technology assessment bodies, pharmaceutical companies, and patient organisations to come together and define new standards for evidence generation and trial design. 

The series will tackle some of the most critical challenges in the field, including the complexity of trial methodologies and the urgent need for patient-centered approaches. Each webinar will feature leading experts offering fresh perspectives on innovative solutions and collaborative strategies designed to accelerate progress and expand patient access to life-changing therapies. 

Webinar 1: Realising Clinical trials in Ultra-Rare diseases

Webinar 2: Evidence Assessment Framework – The need for a mindset shift for developers, regulators and HTAs

Webinar 3: Single arm, RCT or something in between – how to enrich clinical trial design and analysis in rare diseases

Webinar 4: Enhancing patient-centricity in Rare Disease Clinical Trials

The SPACE (Supportive Environments for Physical and Social Activity, Healthy Ageing and Cognitive Health) project aims to figure out how where we live affects dementia and brain health as we get older. Some research suggests that where we live might influence our brain health. As more of us now live in towns and cities, it is important that the environment where we live (regardless of geographic location or socio-economic status) is designed to maximise our brain health.

Please visit the SPACE website to find out more.

PODCASTS ARE ALSO AVAILABLE TO LISTEN TO:

EPISODE 1: 

Hosted by Ruth Hunter (Professor of Public Health and Planetary Health, Queens University Belfast) and Ollie Graham (Thought-TV) - The environment we live in, work in, and play in, can have a huge impact on how we age. In this episode, we will hear from two experts: Sara Adar (University of Michigan) and Jennifer McKinley (Queen's University Belfast) about the environmental impact on ageing.

EPISODE 2:

Hosted by Ruth Hunter (Professor of Public Health and Planetary Health, Queens University Belfast) and Ollie Graham (Thought-TV) - Our behaviours and our environment have the potential to change the way our genes work. In this episode, we will hear from two experts: Eileen Crimmins (University of Southern California) and Amy Jayne McKnight (Queen's University Belfast) about epigenetics and ageing.

EPISODE 3:

Hosted by Ruth Hunter (Professor of Public Health and Planetary Health, Queens University Belfast) and Ollie Graham (Thought-TV) - What does the future of ageing research look like? In this episode, we will hear from two experts: Jinkook Lee (University of Southern California) and Bernadette McGuinness (Queen's University Belfast) about the future of ageing research.

The Kid’s Trial was an online project created with kids for kids to learn about how we do health research. While it is now complete, it's structure and results are still of interest.

For more information, please visit The Kid's Trial website.