Aims: This network will aim to unite register data researchers and researchers working with reported symptoms data from population-based cohorts to establish a better common understanding of how to define PCC and how symptom clusters and diagnoses in clinical settings compare with each other and over time – in order to better define PCC patients and accelerate research on PCC, its characteristics and treatments.
We will increase Nordic coordination and progress on this key point by establishing a multi-national Nordic network for PCC-related research. The network will operate across the Nordic countries and ensure multidisciplinary sharing and use of emerging insights. It will also incorporate patient representation and will foster continuous exchange of information and experiences from different research modalities, across Nordic countries and our broader networks, to ensure rapid exchange of insights and cross-fertilisation of ideas.
Network activities: This 3-year open network brings together researchers with prior experience of Nordic collaboration to accelerate understanding of how we can identify PCC patients and accelerate research on PCC, its characteristics and treatments.
The network will organize meetings and seminars internally and externally, organize research exchanges, support research groups with ethical and legal questions, and communicate the activities of the network, reports from meetings and findings of external relevance through meetings, webinars and other channels. We will maintain a knowledge bank of evidence to support better PCC diagnosis.
We will build on the strong foundations of Nordic register and patient data, and improve researcher interactions to accelerate insights. Patients and other stakeholders will be involved in the network.
Expected outcomes and Nordic added value: This network is expected to result in better ability to identify and study PCC in healthcare databases, registers and cohort studies, as well as better ability to define appropriate patients for trials of new treatments. It will accelerate Nordic research in this area by closer contacts, more rapid sharing of insights and cross-fertilisation between different research modalities and groups. It will also improve patient involvement as well as dissemination and outreach to stakeholders and end-users, ensuring relevance and applicability.