Direct solicitation of patients to participate in treatment research and using billing records to collate research data, both done without prior permission of the patient, are overt aims and outcomes of the method. This seems to violate accepted guidelines for clinical research.
Patients have no opportunity to decline identification as potential treatment research participants.
The rarity of a disease should not exempt researchers from following appropriate guidelines. Institutional review board-approved World Wide Web advertising is a more suitable use of the Internet to obtain research participation. Applying World Wide Web technology to the study of patients with rare diseases. Ann Intern Med. The new Minnesota law does not, however, prohibit contact with an individual to offer an opportunity to participate prospectively in individual research studies, even if the person has not given permission for their medical record information to be used for research purposes.