Experience With Direct-to-Patient Recruitment for Enrollment Into a Clinical Trial in a Rare Disease: A Web-Based Study

Jeffrey Krischer   ^{1 *} , PhD ;   Peter F Cronholm   ^{2 *} , MSCE, MD ;   Cristina Burroughs   ^{1 *} , BS ;   Carol A McAlear   ^{2 *} , MA ;   Renee Borchin   ^{1 *} , BSW ;   Ebony Easley   ^{2 *} , MPH ;   Trocon Davis   ^{2 *} , BA ;   Joyce Kullman   ^{3 *} , BS ;   Simon Carette   ^{4 *} , MD ;   Nader Khalidi   ^{5 *} , MD ;   Curry Koening   ^{6 *} , MS, MD ;   Carol A Langford   ^{7 *} , MHS, MD ;   Paul Monach   ^{8 *} , MD, PhD ;   Larry Moreland   ^{9 *} , MD ;   Christian Pagnoux   ^{4 *} , MD ;   Ulrich Specks   ^{10 *} , MD ;   Antoine G Sreih   ^{2 *} , MD ;   Steven Ytterberg   ^{10 *} , MD ;   Peter A Merkel   ^{2 *} , MPH, MD ;   Vasculitis Clinical Research Consortium   ^{11 *}

¹ Rare Diseases Clinical Research Network Data Coordinating Center, Health Informatics Institute, University of South Florida, Tampa, FL, United States

² University of Pennsylvania, Philadelphia, PA, United States

³ Vasculitis Foundation, Kansas City, MO, United States

⁴ Mount Sinai Hospital, Toronto, ON, Canada

⁵ St. Joseph's Healthcare Hamilton, Hamilton, ON, Canada

⁶ University of Utah, Salt Lake City, UT, United States

⁷ Cleveland Clinic Foundation, Cleveland, OH, United States

⁸ Boston University School of Medicine, Boston, MA, United States

⁹ University of Pittsburgh, Pittsburgh, PA, United States

¹⁰ Mayo Clinic, Rochester, MN, United States

¹¹ Vasculitis Clinical Research Consortium, Philadelphia, PA, United States

*all authors contributed equally