Citations (14)
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Richard Bedlack, Allison Pogemiller, Jeremy Shefner, Merit Cudkowicz & Terri Heiman-Patterson. (2020) ALS clinical research learning institutes (ALS-CRLI): empowering people with ALS to be research ambassadors. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:3-4, pages 216-221.
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R.S. Bedlack, Paul Wicks, Timothy Vaughan, Alicia Opie, Rebecca Blum, Amanda Dios & Ghazaleh Sadri-Vakili. (2019) Lunasin does not slow ALS progression: results of an open-label, single-center, hybrid-virtual 12-month trial. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 20:3-4, pages 285-293.
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Evan de Bie, Bjorn Oskarsson, Nanette C. Joyce, Alina Nicorici, Gregorij Kurillo & Jay J. Han. (2017) Longitudinal evaluation of upper extremity reachable workspace in ALS by Kinect sensor. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 18:1-2, pages 17-23.
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Zhongbo Chen & Martin R. Turner. (2010) The internet for self-diagnosis and prognostication in ALS. Amyotrophic Lateral Sclerosis 11:6, pages 565-567.
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Articles from other publishers (10)
Shelagh K. Genuis, Westerly Luth, Garnette Weber, Tania Bubela & Wendy S. Johnston. (2023) Asynchronous online focus groups for research with people living with amyotrophic lateral sclerosis and family caregivers: usefulness, acceptability and lessons learned. BMC Medical Research Methodology 23:1.
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Paul Wicks, Lindsey Wahlstrom-Edwards, Sam Fillingham, Andrea Downing & Elin Haf Davies. (2023) So You Want to Build Your Disease’s First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience. The Patient - Patient-Centered Outcomes Research 16:3, pages 183-199.
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Paul Mehta, Jaime Raymond, Moon Kwon Han, Theodore Larson, James D Berry, Sabrina Paganoni, Hiroshi Mitsumoto, Richard Stanley Bedlack & D Kevin Horton. (2021) Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry’s Research Notification Mechanism. Journal of Medical Internet Research 23:12, pages e28021.
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R. S. Bedlack, M. E. Cudkowicz, S. Paganoni, H. Khan-Tareen & J. A. Andrews. (2021) Accessing Investigational Products Outside of a Trial: Considerations for Neuromuscular Providers. Current Treatment Options in Neurology 23:12.
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Raghav Govindarajan, James D. Berry, Sabrina Paganoni, Michael T. Pulley & Zachary Simmons. (2020) Optimizing telemedicine to facilitate amyotrophic lateral sclerosis clinical trials. Muscle & Nerve 62:3, pages 321-326.
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Pronabesh DasMahapatra, Priya Raja, Jeremy Gilbert & Paul Wicks. (2017) Clinical trials from the patient perspective: survey in an online patient community. BMC Health Services Research 17:1.
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Michelle M. Kazmer, Mia Liza A. Lustria, Juliann Cortese, Gary Burnett, Ji-Hyun Kim, Jinxuan Ma & Jeana Frost. (2014) Distributed knowledge in an online patient support community: Authority and discovery. Journal of the Association for Information Science and Technology 65:7, pages 1319-1334.
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Joanne Kotz. (2012) Bringing patient data into the open. Science-Business eXchange 5:25, pages 644-644.
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Melanie Swan. (2012) Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. Journal of Medical Internet Research 14:2, pages e46.
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