Long-lasting health problems that follow an infection with COVID-19 are referred to as the "post-COVID condition" (PCC). During the COVID-19 pandemic, extensive data sets were generated to break down the clinical picture of COVID-19 and post-COVID. However, this poses two problems for researchers: Firstly, the virus has changed constantly since then, and secondly, these data sets still vary greatly in size and complexity, in their reference to different groups of patients, in their collection times, but also in their tailoring to specific questions.
The NAPCODE ("National Post-COVID Dataset") project was launched to pool the resources of previous research on COVID-19 and make them available for PCC research. It arose from the findings of the NUM predecessor project NAPKON ("National Pandemic Cohort Network") and is funded by the Federal Ministry of Research, Technology and Space (BMFTR). In order to advance PCC research, the project will initially create a common set of variables that will incorporate findings from both COVID-19 research and post-COVID research: current literature, experts and those affected will contribute to this, as will other national and European data sets. Particular attention is paid to aspects such as diagnosis, risk factors and interventions. A post-COVID dataset tailored to PCC research will then be created from the existing NAPKON dataset, which will be available in three variants: pseudonymised (coded), anonymised (summarised and de-identified) and synthesised (generated, model-based).
Pooling this data will make post-COVID research much easier, for example in terms of risk factors and efficient interventions. But not only that, the clarification of the question "What exactly is post-COVID?" should also improve the care of PCC patients in the future.
Are you a patient, relative, researcher or doctor? Then you are welcome to support the project by taking part in the survey
It takes about 30 minutes to complete and is open until 31 December 2025. Your answers will of course be treated confidentially and will only be analysed as part of the project.
You are welcome to forward this survey to other interested parties or print out and display the attached flyer. Thank you for your support and commitment!
Your NAPCODE team
E-mail: napcode@idcohorts.net