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Procedures for registration and evaluation of exceptional case histories

If you as a patient, relative or treatment provider would like to tell about an unusual case history, NAFKAM can be contacted by phone, letter, web registration or e-mail where you briefly say something about the type of disease and the results experienced when using/having used alternative treatment. The project coordinator will check if the criteria for participation in the register are met. More information may be asked for in order to make a decision. This usually happens by the coordinator calling the person who has made contact. All information will be treated confidentially and written material will be kept in a locked place.

If the case history meets the criteria for inclusion in the register, the patient will receive a registration form (contact information, personal information, disease history, conventional medical treatment, alternative treatment, self evaluation) and a patient consent form. The papers are to be filled in, signed and returned to NAFKAM in a pre-stamped envelope.

When NAFKAM has received the registration form and the patient consent form, a request for medical records will be sent to each of the doctors, hospitals and alternative treatment providers registered by the patient.

A doctor employed by NAFKAM receives all the material gathered for each participant and undertakes the medical assessment.  
 
The case histories will end up in three categories:
• "Medical exceptional case history"
• "Possible medical exceptional case history"
• "Not medical exceptional case history"

Some histories will also be assessed by external experts who are not affiliated with NAFKAM. The histories presented to external experts will be made anonymous.

All case histories registered, no matter in what category they end up, may be used for research purposes. For researchers outside NAFKAM the material will be made anonymous. NAFKAM will communicate inquiries from researchers to patients.