COCOS-IPF is an international initiative aiming at identifying a Core Outcome Set (COS) and outcome measures for and with patients with a progressive form of pulmonary fibrosis for use in routine clinical care.

The ultimate goal is to measure and act upon outcomes in routine care that matter most to patients and their caregiver.

Idiopathic pulmonary fibrosis (IPF) and related progressive pulmonary fibrosis diseases are rare diseases that cause scarring of the lungs. This results in people having difficulty breathing and performing daily activities as oxygen is not properly being taken up by the lungs. The disease continues to get worse and cannot be cured yet. Major progresses have already been made to diagnose the disease and to treat patients with disease-delaying medication. However, patients still have several unmet needs which require urgent action as emphasized internationally by patient advocacy groups and healthcare professionals.

Clinical pulmonary fibrosis teams should offer patients a personalized treatment/care plan tailored to their individual needs. But we do not know yet what outcomes/factor are most important to patients and clinicians.

Hence, this project aims to identify a Core Outcome Set (COS) and link their corresponding measures for pulmonary fibrosis care in Europe.

An outcome is a factor that can be measured and that can indicate whether a patient feels better or whether certain test results change following a treatment. We will include clinical outcomes as well as patient-reported outcomes. 

A Core Outcome Set (COS) is defined as “an agreed standardised set of outcomes that should be measured and reported as a minimum, in all clinical trials in specific areas of health of healthcare” (Williamson, et al. Trials 2012).

The COS will embed what patients and their caregiver value the most. The COS can then be used by clinicians and researchers to support shared decision-making and to develop best practice models of care. The goal is to facilitate person-centred care and patient-professional communication, to measure value of care and to support quality improvement initiatives.

Involving and hence actively collaborating with patients and their caregivers is crucial to make sure that research is relevant for them and hence to create a Core Outcome Set that is of most value within pulmonary fibrosis care. In this project, patient representatives are part of the steering committee as we put co-design to the forefront. 

We are thankful to receive funding from the European Joint Programme on Rare Diseases (click here for more information).  The project will take 3 years to complete and started on October 1, 2022.