title: Interest in participating in clinical research: A study of essential tremor patients.
abstract: Enrolling essential tremor (ET) patients in clinical research can be challenging. Investigators can maximize recruitment by targeting patient subgroups with greater interest in participation. Nothing has been published on factors that are associated with higher levels of interest in participation. The objective of this study was to identify factors associated with higher levels of interest in participating in clinical research on ET. A total of 149 ET patients were questioned about level of interest in participating in future research. Two questions were used, although one was of primary interest. Interest was rated from 0 to 10 (maximal). Data were collected on demographic factors, family history, and tremor-related disability. Tremor severity was assessed. The mean level of interest was 8.0 +/- 2.3. Level of interest was not related to age of tremor onset, tremor duration, tremor severity, extent of tremor-related disability, or use of tremor medication. Level of interest was related to family history of tremor (P < 0.05), concern that other family members might develop tremor (P < 0.05), >2 versus 0 live births in women (P < 0.05), the view that the tremor worsens with age (P < 0.05), and presence of head tremor (P = 0.05). A variety of factors were identified that were associated with greater interest in participating in clinical research. These observations should be assessed in additional patient samples. Investigators may use our observations to identify and target patients for clinical trials and other research.
authors.affiliation: H. Sergievsky Center, College of Physicians and Surgeons, Columbia University, New York, New York, USA. EDL2@columbia.edu
authors.forename: Elan D
authors.initials: ED
authors.lastname: Louis
authors.forename: Lakeisha M
authors.initials: LM
authors.lastname: Applegate
authors.forename: Eileen
authors.initials: E
authors.lastname: Rios
mesh_terms: D035843:Biomedical Research; D003710:Demography; D020329:Essential Tremor / Q000175:diagnosis / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D009460:Neurologic Examination; D010358:Patient Participation; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires