Researchers want to find treatments faster for patients with lung scarring.
We held an online education event on Tuesday 1st November 2022. Huge thanks to everyone who attended. Recording available NOW.
If you are a patient, carer, family member, or friend affected by lung scarring or a patient organisation from anywhere around the world, this event is for you!
Healthcare professionals and researchers also very welcome!
This is an ambitious project that could change the lives of thousands of people affected by lung scarring around the world. Join us to help make REMAP-ILD a reality.
Listen, learn and get involved.
- Learn why this research is needed.
- Understand the aims of the project, what is happening and when.
- Learn about the new type of clinical trial design which could help find treatments faster.
- Hear from patients and family members about why they think this project is important and why they are getting involved.
- Have your questions answered by the panel of speakers.
What is REMAP-ILD?
REMAP-ILD is the name of an ambitious project to rapidly assess potential treatments for patients affected by lung scarring. This project is in the planning stages. The aim is to create a global platform to carry out clinical trials. The team will use a new approach in trial design that will enable multiple therapies to be assessed at the same time, which are known as Randomized, Embedded, Multifactorial, Adaptive Platform (REMAP) trials. They want to make it easier for all patients with progressive lung scarring to take part in the trial and minimise the disruption to patients' and the overall burden of taking part. We want to find effective treatments faster.
Meet the Speakers
Professor Gisli Jenkins
Professor Jenkins is an expert in lung scarring. He is based at Imperial College London at the Margaret Turner Warwick Centre for Fibrosing Lung Disease. Professor Jenkins is passionate about changing the lives of patients affected by pulmonary fibrosis and has dedicated his career to finding a cure for pulmonary fibrosis.
Dr Leticia Kawano-Dourado
Dr Kawano-Dourado is an expert in clinical trial design and gathering evidence to improve patient care. She shares her time between the HCor Research Institute and University of Sao Paulo, Brazil and the MAGIC Evidence Ecosystem Foundation in Norway. Dr Kawano-Dourado is passionate about working together as a community to change the lives of patients around the world.
Tom is a carer for his wife who has IPF. He is the Chair of the Northern Ireland Pulmonary Fibrosis Support Group, a position he has held since 2016. He is an advocate of improved care for sufferers of PF and their families in Northern Ireland and throughout the UK and enjoys his role with the European Respiratory Society Pulmonary Fibrosis Patient Advisory Group.
Shama works as an Independent Care Act Advocate at the Age UK. Previously she worked at Victims Support Service, Racial Equality Council, Women’s Centre and The Carers Centre. She has vast experience as a volunteer Co-ordinator and setting up and running a successful Befriending Service for the carers. Shama was diagnosed with PF in January 2022 and then NSIPF in May. "I must say, it was a shock to me and to my family. My daughter found PF groups and I joined my local and nearby groups to gain knowledge and speak with other patients. I learnt that it is more than before important to stay positive."
Wendy Adams, PhD
Dr Wendy Adams works with scientists and people affected by pulmonary fibrosis to improve the relevance, speed and impact of research. She is the Research Manager at Action for Pulmonary Fibrosis. Wendy is passionate about the huge value people with lived experience bring to shaping the future of research.