Literature DB >> 32415876

Optimizing telemedicine to facilitate amyotrophic lateral sclerosis clinical trials.

Raghav Govindarajan1, James D Berry2, Sabrina Paganoni3, Michael T Pulley4, Zachary Simmons5.   

Abstract

Amyotrophic lateral sclerosis (ALS) has the largest drug pipeline among neuromuscular diseases, with over 160 companies actively involved in ALS research. There is a growing need to recruit trial participants, but ALS patients often have limited mobility and most ALS trials are conducted in a small number of major centers. These factors effectively limit patient participation, particularly for those in rural areas. The current coronavirus disease 2019 (COVID-19) pandemic has necessitated the more widespread use of telemedicine technology for clinical care, and has prompted consideration of its increased use for clinical trials. In this opinion piece, we describe the current state of telemedicine for recruitment, consenting, and screening of participants for clinical trials. We also summarize the available data on remote administration of outcome measures. Current challenges include validation of outcome measures for remote assessment, as well as technological, regulatory, and licensure barriers.
© 2020 Wiley Periodicals, Inc.

Entities:  

Keywords:  ALS; COVID-19; clinical trials; eConsent; telemedicine; telepresenter; telescreening

Mesh:

Year:  2020        PMID: 32415876     DOI: 10.1002/mus.26921

Source DB:  PubMed          Journal:  Muscle Nerve        ISSN: 0148-639X            Impact factor:   3.217


  5 in total

1.  A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities.

Authors:  Jacqueline Montes; Katy J Eichinger; Amy Pasternak; Cara Yochai; Kristin J Krosschell
Journal:  Orphanet J Rare Dis       Date:  2022-01-04       Impact factor: 4.123

2.  Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis.

Authors:  Shelagh K Genuis; Westerly Luth; Tania Bubela; Wendy S Johnston
Journal:  BMC Neurol       Date:  2022-04-12       Impact factor: 2.474

Review 3.  Emerging technologies for management of patients with amyotrophic lateral sclerosis: from telehealth to assistive robotics and neural interfaces.

Authors:  Raffaele Pugliese; Riccardo Sala; Stefano Regondi; Benedetta Beltrami; Christian Lunetta
Journal:  J Neurol       Date:  2022-01-21       Impact factor: 6.682

4.  Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry's Research Notification Mechanism.

Authors:  Paul Mehta; Jaime Raymond; Moon Kwon Han; Theodore Larson; James D Berry; Sabrina Paganoni; Hiroshi Mitsumoto; Richard Stanley Bedlack; D Kevin Horton
Journal:  J Med Internet Res       Date:  2021-12-07       Impact factor: 5.428

Review 5.  How to manage with telemedicine people with neuromuscular diseases?

Authors:  Fiore Manganelli; Luigi Lavorgna; Emanuele Spina; Francesca Trojsi; Stefano Tozza; Aniello Iovino; Rosa Iodice; Carla Passaniti; Gianmarco Abbadessa; Simona Bonavita; Letizia Leocani; Gioacchino Tedeschi
Journal:  Neurol Sci       Date:  2021-06-25       Impact factor: 3.307

  5 in total

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