From 2005 to 2020, NAFKAM collected data on unusually good or bad courses of disease among Scandinavian patients, which they themselves link to their use of complementary and alternative medicine (CAM). The information collected, was then systematized in NAFKAM's Registry for Exceptional Courses of Diseases (RESF).
The main purpose of this registry was to collect information that could serve as a basis for future research in CAM. During these fifteen years, data on a little over 550 unique disease courses were collected, which has resulted in a total of 28 scientific publications.
The register has also been important for NAFKAM in carrying out its assigment of monitoring the market and notifying the authorities of possible threats to patient safety. After an internal discussion at NAFKAM, leader Miek Jong made the decision to end RESF's data collection from Jan 1, 2021:
- While RESF previously was a valuable instrument for researchers and projects at NAFKAM, our projects now routinely include dialogue with patients, their next-of-kins and their therapists. User participation has generally become a more integrated part of research, and documentation of this is a requirement in all research funding, says Miek Jong.
After the collection has been completed at the end of 2020, NAFKAM will prepare a final report with group-level summaries of the registry's content. There will also be an overview of how RESF has contributed to research and scientific publications.
Patients with unexpected courses of disease, which they relate to their use of CAM and wish to report, are from 2021 encouraged to inform both their CAM provider and their medical doctor about this.
All information provided to RESF over the years remains confidential, and all written material will continue to be stored securely and be available for research until final termination.
