What is an exceptional course of disease?
«Exceptionally good courses of disease» are disease histories in which the patient experiences unexpected recovery or significant reduction in symptoms. «Exceptionally poor courses of disease» are courses in which the patient experiences an unexpected exacerbation associated with the use of CAM (1) – (2, 4).
A comprehensive amount of patient information is collected at registration: contact information, personal information, the patient’s own assessment of their disease history, and treatment. With the patient’s consent, information is also collected from the health services and alternative therapists.
An experienced general practitioner at the National Research Center in Complementary and Alternative Medicine performs a medical assessment of the anonymised patient history based on given criteria (2). When it is considered that there is a more than 10 % probability that the course of disease can be explained on the basis of given (conventional) medical treatment, the conclusion is non-exceptional course. If there is a less than 10 % probability that the course of disease can be thus explained, this indicates a possible exceptional course.
An anonymised, possible exceptional course of disease is then reviewed by an independent, experienced specialist in the relevant field. During this assessment, diagnostic certainty, variability of measurement variables, the known natural course of the disease, its manifestation of symptoms and its prognosis for given degrees of severity are considered. Where the expert concludes that there is a less than 1 % probability that the course can be explained based on given (conventional) medical treatment, the course of disease is considered to be an exceptional course of disease.
The research centre and the registry also have routines for notifying the health authorities if the registry receives multiple reports of negative patient experiences from using CAM (5).
Unexpected and unusual positive courses of disease are frequently interpreted as spontaneous remission, irrespective of the patient’s perceptions, experience and reflection. The Registry of Exceptional Courses of Disease will help to generate hypotheses to fill the knowledge gap between insufficient scientific evidence of efficacy, and patient-interpreted efficacy of CAM (1) – (3, 6).