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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 19, 2018 - Issue 1-2
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Research Article

Experience with telemedicine in a multi-disciplinary ALS clinic

Marc Van De RijnHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, View further author information
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Sabrina PaganoniHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Neurology, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MA, USA, and ;VA Boston Healthcare System, Boston, MA, USAView further author information
,
Mark Levine-WeinbergHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Neurology, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MA, USA, and View further author information
,
Katharine CampbellHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Neurology, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MA, USA, and View further author information
,
Amy Swartz EllrodtHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Neurology, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MA, USA, and View further author information
,
Juan EstradaHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Neurology, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MA, USA, and View further author information
,
Adam B. CohenHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Neurology, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MA, USA, and View further author information
,
Lee H. SchwammHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Neurology, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MA, USA, and View further author information
&
James D. BerryHarvard Medical School, Spaulding Rehabilitation Hospital, Charlestown, MA, USA, ;Department of Neurology, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MA, USA, and Correspondence[email protected]
View further author information
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Pages 143-148 | Received 01 May 2017, Accepted 08 Oct 2017, Published online: 18 Dec 2017

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Betts Peters, Kerth O’Brien & Melanie Fried-Oken. (2022) A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States. Disability and Rehabilitation: Assistive Technology 0:0, pages 1-14.
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Kate T. Brizzi, John F. P. Bridges, Jill Yersak, Calaneet Balas, Neil Thakur, Miriam Galvin, Orla Hardiman, Chad Heatwole, John Ravits, Zachary Simmons, Lucie Bruijn, James Chan, Richard Bedlack & James D. Berry. (2020) Understanding the needs of people with ALS: a national survey of patients and caregivers. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:5-6, pages 355-363.
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Jochem Helleman, Esther T. Kruitwagen, Leonard H. van den Berg, Johanna M. A. Visser-Meily & Anita Beelen. (2020) The current use of telehealth in ALS care and the barriers to and facilitators of implementation: a systematic review. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:3-4, pages 167-182.
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James Grogan, Susan Walsh, Anne Haulman, Habib Yazgi, Andrew Geronimo, Mansoureh Mamarabadi & Zachary Simmons. (2023) Rapid Conversion to a Completely Virtual Multidisciplinary ALS Clinic in Response to the COVID-19 Pandemic: Implications for Future Care Delivery. Journal of Clinical Neuromuscular Disease 24:4, pages 207-213.
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Emanuela Coriolano Fidelix, Glauciane Costa Santana, Daniele Montenegro da Silva Barros & Mário Emílio Teixeira Dourado Junior. (2023) Telehealth for amyotrophic lateral sclerosis in a multidisciplinary service in a Brazilian reference center. Arquivos de Neuro-Psiquiatria 81:05, pages 469-474.
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Kate Brizzi. 2023. Neuropalliative Care, Part II. Neuropalliative Care, Part II 29 48 .
George Intas, Charalampos Platis & Pantelis Stergiannis. 2023. Handbook of Computational Neurodegeneration. Handbook of Computational Neurodegeneration 595 614 .
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Jochem Helleman, Jaap N. E. Bakers, Evelien Pirard, Leonard H. van den Berg, Johanna M. A. Visser-Meily & Anita Beelen. (2022) Home-monitoring of vital capacity in people with a motor neuron disease. Journal of Neurology 269:7, pages 3713-3722.
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Milica LAZOVIC, Dejan NIKOLIC, François C. BOYER, Kristian BORG, Maria G. CERAVOLO, Mauro ZAMPOLINI & Carlotte KIEKENS. (2022) Evidence-based position paper on Physical and Rehabilitation Medicine practice for people with amyotrophic lateral sclerosis. European Journal of Physical and Rehabilitation Medicine 58:2.
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Véronique Danel Brunaud. (2022) Chapitre 4. Évaluation éthique des téléconsultations de suivi des patients atteints de sclérose latérale amyotrophique en phase avancée. Journal international de bioéthique et d'éthique des sciences Vol. 32:4, pages 87-100.
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Colleen O'Connell & Suzanne Salsman. 2022. Telerehabilitation. Telerehabilitation 135 148 .
Catherine Enochs, Amy G. FilbrunCourtney IwanickiHaley MoraniecJulie LehrmannJourdan StifflerSharyn DagherChris TapleyHanna PhanRebekah RainesSamya Z. Nasr. (2021) Development of an Interdisciplinary Telehealth Care Model in a Pediatric Cystic Fibrosis Center. Telemedicine Reports 2:1, pages 224-232.
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Amy Roman, Carolyn Baylor, Lindsay Johnson & Maya Barton. (2021) Expanding Availability of Speech-Generating Device Evaluation and Treatment to People With Amyotrophic Lateral Sclerosis (pALS) Through Telepractice: Perspectives of pALS and Communication Partners. American Journal of Speech-Language Pathology 30:5, pages 2098-2114.
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Fabiola De Marchi, Maria Francesca Sarnelli, Marcella Serioli, Ilaria De Marchi, Ermes Zani, Nicola Bottone, Serena Ambrosini, Raffaella Garone, Roberto Cantello, Letizia Mazzini, Valentina Solara, Giampaolo Biroli, Sergio Riso, Renato Vercelli, Maurilio Massara & .. (2020) Telehealth approach for amyotrophic lateral sclerosis patients: the experience during COVID‐19 pandemic. Acta Neurologica Scandinavica 143:5, pages 489-496.
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Ileana M. Howard & Kathleen Burgess. (2021) Telehealth for Amyotrophic Lateral Sclerosis and Multiple Sclerosis. Physical Medicine and Rehabilitation Clinics of North America 32:2, pages 239-251.
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Gianluca Costamagna, Elena Abati, Nereo Bresolin, Giacomo Pietro Comi & Stefania Corti. (2020) Management of patients with neuromuscular disorders at the time of the SARS-CoV-2 pandemic. Journal of Neurology 268:5, pages 1580-1591.
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Megan Fredwall, Debbie Terry, Laurie Enciso, Maggie Mary Burch, Kristen Trott & Dara V.F. Albert. (2021) Short-term outcomes in pediatric and adolescent patients with psychogenic nonepileptic events seen by telemedicine during the COVID-19 pandemic. Epilepsy & Behavior 117, pages 107739.
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Fabiola De Marchi, Elena Contaldi, Luca Magistrelli, Roberto Cantello, Cristoforo Comi & Letizia Mazzini. (2021) Telehealth in Neurodegenerative Diseases: Opportunities and Challenges for Patients and Physicians. Brain Sciences 11:2, pages 237.
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George Intas, Charalampos Platis & Pantelis Stergiannis. 2020. Handbook of Computational Neurodegeneration. Handbook of Computational Neurodegeneration 1 20 .
Mario A. Saporta, Volkan Granit, Richard Lewis & Michael Benatar. (2020) Yes, we can: Neuromuscular examination by telemedicine. Muscle & Nerve 62:6.
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Susana Pinto, Stefano Quintarelli & Vincenzo Silani. (2020) New technologies and Amyotrophic Lateral Sclerosis – Which step forward rushed by the COVID-19 pandemic?. Journal of the Neurological Sciences 418, pages 117081.
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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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Jinsy A. Andrews, James D. Berry, Robert H. Baloh, Nathan Carberry, Merit E. Cudkowicz, Brixhilda Dedi, Jonathan Glass, Nicholas J. Maragakis, Timothy M. Miller, Sabrina Paganoni, Jeffrey D. Rothstein, Jeremy M. Shefner, Zachary Simmons, Michael D. Weiss & Richard S. Bedlack. (2020) Amyotrophic lateral sclerosis care and research in the United States during the COVID ‐19 pandemic: Challenges and opportunities . Muscle & Nerve 62:2, pages 182-186.
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James Grogan & Zachary Simmons. (2020) Telemedicine for the Care of Neuromuscular Disorders. Current Treatment Options in Neurology 22:6.
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Anne Haulman, Andrew Geronimo, Amit Chahwala & Zachary Simmons. (2020) The Use of Telehealth to Enhance Care in ALS and other Neuromuscular Disorders. Muscle & Nerve 61:6, pages 682-691.
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Lee H. Schwamm, Alistair Erskine & Adam Licurse. (2020) A digital embrace to blunt the curve of COVID19 pandemic. npj Digital Medicine 3:1.
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Edward D. Esplin, Ruth K. Abramson & David Flannery. 2020. Handbook of Clinical Adult Genetics and Genomics. Handbook of Clinical Adult Genetics and Genomics 417 430 .
Marcus Pohl & Martin Groß. 2020. Neurologische Beatmungsmedizin. Neurologische Beatmungsmedizin 393 408 .
Esther Hobson, Wendy Baird, Mike Bradburn, Cindy Cooper, Susan Mawson, Ann Quinn, Pamela J Shaw, Theresa Walsh & Christopher J McDermott. (2019) Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre. BMJ Open 9:10, pages e028526.
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Kate Brizzi, Sabrina Paganoni, April Zehm, Fabiola De Marchi & James D. Berry. (2019) Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center. Muscle & Nerve 60:2, pages 137-140.
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Sabrina Paganoni, Marc van de Rijn, Kristin Drake, Katherine Burke, Michael Doyle, Amy Swartz Ellrodt, Katherine Nicholson, Nazem Atassi, Fabiola de Marchi, Suma Babu, Juan Estrada, Lee H. Schwamm & James D. Berry. (2019) Adjusted cost analysis of video televisits for the care of people with amyotrophic lateral sclerosis. Muscle & Nerve 60:2, pages 147-154.
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Christopher T. DoughtyAmanda C. GuidonSabrina PaganoniE. Tessa Hedley-Whyte. (2019) Case 12-2019: A 60-Year-Old Man with Weakness and Difficulty Chewing. New England Journal of Medicine 380:16, pages 1566-1574.
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Sabrina Paganoni & Zachary Simmons. (2019) Telemedicine to innovate amyotrophic lateral sclerosis multidisciplinary care: The time has come. Muscle & Nerve 59:1, pages 3-5.
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