PATIENTS

What is Interstitial Lung Disease (ILD)?

Interstitial lung disease is a general category that includes many different lung conditions. Fibrotic lung conditions result in scarring of the lung tissue. This causes shortness of breath and cough, and has an enormous impact on people’s quality of life. We currently know that progressive lung scarring may be caused by a few conditions like Rheumatoid Arthritis and previous exposure to asbestos, birds (pigeons, parrots and budgies particularly) and moulds. In cases where no cause is found, we sometimes refer to this type of lung scarring as Idiopathic Pulmonary Fibrosis (IPF). However, regardless of whether a cause is found, or not, we do not have a cure.

What is the INJUSTIS Study?

We need to understand whether patients with progressive pulmonary fibrosis, regardless of the cause, have shared reasons for their disease progression. We will do this by assessing whether the genetic, cellular and chemical signals in the blood of people with IPF and other lung scarring conditions are similar or different. We also need to understand how these conditions change over time. Researchers wish to study the genetic signatures in samples and hope it will lead to a better understanding of why people develop lung fibrosis regardless of its cause and how the disease and its symptoms progress.

What will I need to do if I take part?

This study will last for 2 years and during this time you will need to have various tests/procedures and will need to attend the hospital that recruited you to the study for study visits at specific times (an initial visit and then again 3 months, 12 months and 24 months later, four visits in total).

 

Tests will include a walking test, breathing tests, blood samples being taken and filling in some questionnaires about how you feel.

We are also offering patients the opportunity to take home a small spirometry device (used with an “app” called (patientMpower), as shown in the pictures below.

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We are trying to find out if asking patients with a Fibrotic Lung Disease to take their own spirometry (breathing test) readings at home every day will help predict the course of lung fibrosis better than the normal testing in hospital every 3 months at clinic appointments. It is possible that patients perform better breathing tests (spirometry) when they are in their own environment and not feeling the stress of being at the hospital. Furthermore, getting multiple measurements over three months may give a more accurate assessment of lung function over three months compared with a one-off hospital visit. We also hope to see if measuring lung function every day can provide an early-warning of an exacerbation (worsening of symptoms) of patient’s lung disease which may then, in the future, help guide early treatment for exacerbations.

 

This part of the study is optional and patients can only take part if they have access to a smart phone or tablet, as well as an email address.

 

Is the study available at my own hospital?

 

We have 25 UK hospitals involved in seeing patients for the study. If you are interested in hearing more and your hospital is on the list below – please mention it to your consultant or nurse and they can arrange for you to be given a copy of the information sheets.

 

Nottingham City Hospital

Kings Mill Hospital, Mansfield

Southmead Hospital, North Bristol

Royal Derby Hospital

North Manchester General Hospital

Royal Albert Edward Infirmary, Wigan

Queens Hospital, Burton on Trent

Medway Maritime Hospital, Kent

University Hospital of North Tees, Stockton-on-Trent

Royal Devon and Exeter Hospital

University Hospitals Coventry and Warwick

Worcestershire Royal Hospital, Worcester

Birmingham Heartlands Hospital

South Tyneside District Hospital, South Shields

Blackpool Victoria Hospital

Royal Victoria Infirmary, Newcastle-Upon-Tyne

St Georges Hospital, London

Kingston Hospital, Surrey

Royal Hallamshire Hospital, Sheffield

North Tyneside General Hospital, Tyne and Wear

New Cross Hospital, Wolverhampton

Wythenshawe Hospital, Manchester

Northumbria Healthcare NHS Trust

Royal United Hospitals, Bath NHS Trust

 

Patients looking for any help and advice regarding their pulmonary fibrosis can visit the Action for Pulmonary Fibrosis website https://www.actionpulmonaryfibrosis.org/ 

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Nottingham Respiratory Research Unit | INJUSTIS Study | 0115-8231326