The “Co-designing a Core Outcome Set for and with patients with Idiopathic Pulmonary Fibrosis” (COCOS-IPF) project aims to develop a Core Outcome Set (COS) and their corresponding measures for idiopathic pulmonary fibrosis (IPF) care in Europe.  

Idiopathic pulmonary fibrosis (IPF) represents a challenging, rare, progressive and irreversible form of interstitial lung disease, mainly affecting older people. Despite efforts to diagnose the disease at an early stage and the development of new drugs, the comprehensive care for IPF still needs improvement.  

European patient advocacy groups and IPF clinical specialists broadly agree that the current care framework is not as good as it could be. A new set of outcomes could help improve this – these are things that can happen as the result of a specific treatment, or other intervention. For example, a person may notice a reduction in their symptoms after taking a medication. These outcomes need defining so that researchers can test the effectiveness of new therapies.  

COCOS-IPF aims to develop a new set of outcomes with the hope of improving care for people living with IPF and to enhance the research into this disease. The project will involve collaboration between professionals and patients and take into account geographical, socio-economic and healthcare system diversity within Europe. 

🧩 Project coordination: A European-wide network of professionals, researchers and patient advocacy organisations.

🔍 What’s the goal?  COCOS-IPF’s mission is to improve the quality of life and care of patients with (progressive) pulmonary fibrosis by measuring and acting upon outcomes that matter most to them.  

🗓️ Timeline: The project started in 2022 and will run until 2025. 

🤝 Our vital role: We are the joint leaders of Work Package 5 and involved in sharing results about the project with a wider audience.  

Find out more: https://www.cocos-ipf.com/  

The project is funded by the European Joint Programme on Rare Diseases . The project will take 3 years to complete and started on October 1, 2022.