Potential validity of conducting research on headache in internet populations

OBJECTIVE: While it is technically feasible to conduct migraine research on the Internet, can one be sure that the subjects who participate actually have the disorder? We examined this issue in 109 sequential subjects in an Internet study of migraineurs' symptoms. BACKGROUND: The increasing use of the Internet by the US population provides an opportunity for using this medium in clinical research, but, to be useful, the results of such research must be valid and generalizable. METHODS: Using postings to Internet newsgroups of migraineurs, we recruited subjects to a migraine research site. We examined reported symptoms by comparing them with the International Headache Society's criteria for diagnosis of migraine and by subjective review by a neurologist. We also attempted to contact the subject's primary care physicians to confirm their diagnosis. RESULTS: We found considerable evidence for the validity of the participants' self-reported diagnoses. Most subjects with professed migraine reported quality of pain (97%) and associated symptoms (92%) consistent with that diagnosis, and review of their symptoms and questionnaire responses by the neurologist suggested that almost all subjects (97%) had migraine. Personal physicians confirmed a diagnosis of migraine in 90% of consenting subjects (n=49). CONCLUSIONS: The validity of self-reported diagnosis of migraine does not appear to be an obstacle to conducting research in subject populations on the Internet.