title: Modifiable barriers to enrollment in American ALS research studies.
abstract: Enrollment in ALS research studies is surprisingly low. Here we report on two online patient surveys that help identify some of the reasons. These include failure to invite patients to enroll, especially patients who have already participated in prior studies. Also included are patient concerns about the cost of participation, and confusion about several aspects of studies being offered. Along with prior work, these data suggest specific steps that can be taken to improve enrollment.
authors.affiliation: Duke University and Durham Veterans Affairs Medical Center, 932 Morreene Rd., Durham, NC 27702, USA. bedla001@mc.duke.edu
authors.forename: Richard S
authors.initials: RS
authors.lastname: Bedlack
authors.forename: Paul
authors.initials: P
authors.lastname: Wicks
authors.forename: James
authors.initials: J
authors.lastname: Heywood
authors.forename: Edward
authors.initials: E
authors.lastname: Kasarskis
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000503:physiopathology*; D035843:Biomedical Research; D002986:Clinical Trials as Topic; D003625:Data Collection; D006801:Humans; D020407:Internet; D018579:Patient Selection