We are excited to share the results of a major study part-funded by Breathing Matters at UCL, which could change the way we assess risk in people living with systemic sclerosis-associated interstitial lung disease (SSc-ILD).
The challenge: predicting who is most at risk
Scleroderma (systemic sclerosis) is an autoimmune condition that can cause scarring of the lungs, known as interstitial lung disease (ILD). At present, doctors have limited tools to predict how someone’s lung disease will progress. Simple breathing tests and scoring systems help, but they do not always tell the full story.
Having better ways to identify who is at higher risk could guide earlier, more tailored treatment and, ultimately, save lives.
What the study did
Researchers followed 45 people with SSc-ILD, making this the largest study of its kind. All participants underwent:
- Detailed clinical assessments
- Breathing (lung function) tests
- CT scans of the lungs
- A special type of scan called [18F]FDG PET/CT, which measures how much sugar (glucose) is taken up by tissues in the body
Why glucose? Inflammation and scarring processes in the lungs can increase glucose use, so PET/CT scans can “light up” areas that are more active, even before obvious damage is seen on standard scans.
What they found
Over nearly four years of follow-up, about one in three participants sadly died. The researchers discovered that:
- People whose healthy-looking areas of lung tissue still showed high glucose uptake on PET/CT scans had a higher risk of death.
- This refines the information from traditional tests, such as lung function or the ILD-GAP score (a widely used risk calculator).
- When combined with the ILD-GAP score, PET/CT scan results gave an even clearer picture of which patients were most at risk.
Why this matters
This study shows, for the first time, that PET/CT scans could be used to predict survival in scleroderma-related lung disease. The exciting part is that the scans revealed risk in parts of the lung that looked normal on regular CT scans, suggesting they may pick up disease activity much earlier. PET/CT scans gave additional information to that gained from lung function and was able to be used in all patients, unlike lung function which some patients were unable to do.
Looking ahead
While more research is needed, these findings raise the possibility of a new, powerful tool to guide care. By identifying patients at higher risk sooner, doctors could intervene earlier with treatments or monitor them more closely.
This marks real progress in a condition where treatment options remain limited — and it is thanks to the generosity of Breathing Matters supporters that this research is offering hope to those living with interstitial lung disease.
To read the full published article, [18F]FDG PET/CT Predicts Patient Survival in Patients with Systemic Sclerosis-Associated Interstitial Lung Disease, visit here: https://pubmed.ncbi.nlm.nih.gov/40441891/
[Posted September 2025]