Use of the Internet in survey research.

An Internet survey of the Pick's Disease Network showed the potential for use of the Internet for research into diseases that are too rare to find sufficient subjects to gather data on patient and family experiences, helpful interventions, and other care-related information. This descriptive survey used an author-constructed instrument posted on a university server to collect information on both the affected persons and the family. Although the sample cannot be scientific and controlled, there was a 68.6 per cent response rate. The fact that specialists and imaging technology had been used in making the diagnoses, and that, with one exception, the responses were comparable to information in other reports, increased, confidence in the validity of the sample and the responses. One of the biggest needs of caregivers and family members was for more information and support. This survey indicates that such research can provide information about rare diseases so that nurses can be more helpful to patients and caregivers. Further exploration of research uses of the Internet could not only help to get information on rare diseases, but perhaps offer unique research opportunities to students who are using distance-education technologies. J Prof Nurs 17:187-193, 2001.