Virtual Education Event: Finding effective treatments faster for patients with lung scarring

5
April 2023

Watch and learn 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!

Meet our speakers
This is an ambitious project that could change the lives of thousands of people affected by lung scarring around the world.

Watch our recorded webinar to hear the latest updates about the project from an international team of researchers and people affected by pulmonary fibrosis. Learn why they think the project is important and the difference it could make to the lives of patients affected by progressive lung scarring.

Meet our speakers

Dr Wendy Adams

Wendy is the Head of Research at Action for Pulmonary Fibrosis. Wendy is passionate about involving people affected by PF in shaping the future of research. She is facilitating the integration of patient's views and needs within the REMAP-ILD project.

Dr Leticia Kawano-Dourado

Dr Kawano-Dourado is the Global Head of Operations for REMAP-ILD. She 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.

Professor Gisli Jenkins

Professor Jenkins is the Global Lead for REMAP-ILD. He is a world-leading 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.

Shama Malik

Shama was diagnosed with PF in January 2022 and then NSIPF in May 2022.  "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." Shama is a member of the UK REMAP-ILD regional management committee.

Peter Bryce

Peter is the Chair of the Pulmonary Fibrosis Trust. He has a diagnosis of IPF. Peter is passionate about supporting everyone affecting my PF and campaigns and raises awareness of PF.

Pepe Gonzalez

Pepe was diagnosed with IPF at the Royal Brompton Hospital in May 2015.

He has taken part as a patient volunteer in various clinical trials and he is a member of groups representing patients affected by lung conditions, including being a Research Champion for APF.

Pepe is passionate about research and a strong believer that collaboration is key to improve patient outcomes.

Ian Campbell

Ian Campbell is a 71 year-old retired engineering Managing Director living in Fife with his wife Liz. They have been married for 52 years.Many of these years were spent with the family in several exotic countries in the oil, power generation and gold and diamond mining industries. 

He was diagnosed with HP in late 2018 when his quality of life started to deteriorate due to his condition. He has given up golfing and now writes at a computer to pass the time. Thankfully he has successfully published two novels since the pandemic years and is looking to write more.

Professor Chris Ryerson

Chris Ryerson is a Professor of Medicine at the University of British Columbia and Head of the Division of Respiratory Medicine at Providence Health Care in Vancouver, Canada. His research focuses on the diagnosis, management, and prognostication of pulmonary fibrosis, and he has also led several national and international clinical practice guidelines on the diagnosis and management of pulmonary fibrosis.

Dr Sydney Montesi

Sydney Montesi, MD is a pulmonary and critical care physician at Massachusetts General Hospital and an Assistant Professor of Medicine at Harvard Medical School, Boston, Massachusetts, USA. She specializes in the care of patients with interstitial lung disease. Her research focuses on using advanced imaging techniques to quantify pulmonary fibrosis, measure disease activity, and assess treatment response and conducting clinical trials to investigate novel therapies for pulmonary fibrosis.

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.

Check out the REMAP-ILD webpage and follow us on Twitter @REMAP_ILD.

We also held an introductory online education event on Tuesday 1st November 2022. Recording available NOW.

The event covered:

  1. Why the research is needed.
  2. The aims of the project.
  3. Introduction to the new type of clinical trial design which could help find treatments faster.
  4. Patients and family members explaining why they think this project is important and why they are getting involved.
  5. Questions answered by the panel of speakers.

The speakers were:

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 McMillan

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 Malik

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.

> Watch our past webinars online