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

Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clini...
Ausführliche Beschreibung

Gespeichert in:

Autor*in:	Montes, Jacqueline [verfasserIn] Eichinger, Katy J. Pasternak, Amy Yochai, Cara Krosschell, Kristin J.

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2022

Schlagwörter:	Neuromuscular disorders Outcome measure Telehealth Remote assessment Clinical trials Clinical outcome assessments (COA)

Anmerkung:	© The Author(s) 2021

Übergeordnetes Werk:	Enthalten in: Orphanet journal of rare diseases - London : BioMed Central, 2006, 17(2022), 1 vom: 04. Jan.
Übergeordnetes Werk:	volume:17 ; year:2022 ; number:1 ; day:04 ; month:01

Links:	Volltext

DOI / URN:	10.1186/s13023-021-02165-w

Katalog-ID:	SPR050337823

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allfields	10.1186/s13023-021-02165-w doi (DE-627)SPR050337823 (SPR)s13023-021-02165-w-e DE-627 ger DE-627 rakwb eng Montes, Jacqueline verfasserin (orcid)0000-0002-7357-0819 aut A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities 2022 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD. Neuromuscular disorders (dpeaa)DE-He213 Outcome measure (dpeaa)DE-He213 Telehealth (dpeaa)DE-He213 Remote assessment (dpeaa)DE-He213 Clinical trials (dpeaa)DE-He213 Clinical outcome assessments (COA) (dpeaa)DE-He213 Eichinger, Katy J. aut Pasternak, Amy aut Yochai, Cara aut Krosschell, Kristin J. aut Enthalten in Orphanet journal of rare diseases London : BioMed Central, 2006 17(2022), 1 vom: 04. Jan. (DE-627)50900637X (DE-600)2225857-7 1750-1172 nnns volume:17 year:2022 number:1 day:04 month:01 https://dx.doi.org/10.1186/s13023-021-02165-w kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 17 2022 1 04 01
spelling	10.1186/s13023-021-02165-w doi (DE-627)SPR050337823 (SPR)s13023-021-02165-w-e DE-627 ger DE-627 rakwb eng Montes, Jacqueline verfasserin (orcid)0000-0002-7357-0819 aut A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities 2022 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD. Neuromuscular disorders (dpeaa)DE-He213 Outcome measure (dpeaa)DE-He213 Telehealth (dpeaa)DE-He213 Remote assessment (dpeaa)DE-He213 Clinical trials (dpeaa)DE-He213 Clinical outcome assessments (COA) (dpeaa)DE-He213 Eichinger, Katy J. aut Pasternak, Amy aut Yochai, Cara aut Krosschell, Kristin J. aut Enthalten in Orphanet journal of rare diseases London : BioMed Central, 2006 17(2022), 1 vom: 04. Jan. (DE-627)50900637X (DE-600)2225857-7 1750-1172 nnns volume:17 year:2022 number:1 day:04 month:01 https://dx.doi.org/10.1186/s13023-021-02165-w kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 17 2022 1 04 01
allfields_unstemmed	10.1186/s13023-021-02165-w doi (DE-627)SPR050337823 (SPR)s13023-021-02165-w-e DE-627 ger DE-627 rakwb eng Montes, Jacqueline verfasserin (orcid)0000-0002-7357-0819 aut A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities 2022 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD. Neuromuscular disorders (dpeaa)DE-He213 Outcome measure (dpeaa)DE-He213 Telehealth (dpeaa)DE-He213 Remote assessment (dpeaa)DE-He213 Clinical trials (dpeaa)DE-He213 Clinical outcome assessments (COA) (dpeaa)DE-He213 Eichinger, Katy J. aut Pasternak, Amy aut Yochai, Cara aut Krosschell, Kristin J. aut Enthalten in Orphanet journal of rare diseases London : BioMed Central, 2006 17(2022), 1 vom: 04. Jan. (DE-627)50900637X (DE-600)2225857-7 1750-1172 nnns volume:17 year:2022 number:1 day:04 month:01 https://dx.doi.org/10.1186/s13023-021-02165-w kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 17 2022 1 04 01
allfieldsGer	10.1186/s13023-021-02165-w doi (DE-627)SPR050337823 (SPR)s13023-021-02165-w-e DE-627 ger DE-627 rakwb eng Montes, Jacqueline verfasserin (orcid)0000-0002-7357-0819 aut A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities 2022 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD. Neuromuscular disorders (dpeaa)DE-He213 Outcome measure (dpeaa)DE-He213 Telehealth (dpeaa)DE-He213 Remote assessment (dpeaa)DE-He213 Clinical trials (dpeaa)DE-He213 Clinical outcome assessments (COA) (dpeaa)DE-He213 Eichinger, Katy J. aut Pasternak, Amy aut Yochai, Cara aut Krosschell, Kristin J. aut Enthalten in Orphanet journal of rare diseases London : BioMed Central, 2006 17(2022), 1 vom: 04. Jan. (DE-627)50900637X (DE-600)2225857-7 1750-1172 nnns volume:17 year:2022 number:1 day:04 month:01 https://dx.doi.org/10.1186/s13023-021-02165-w kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 17 2022 1 04 01
allfieldsSound	10.1186/s13023-021-02165-w doi (DE-627)SPR050337823 (SPR)s13023-021-02165-w-e DE-627 ger DE-627 rakwb eng Montes, Jacqueline verfasserin (orcid)0000-0002-7357-0819 aut A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities 2022 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD. Neuromuscular disorders (dpeaa)DE-He213 Outcome measure (dpeaa)DE-He213 Telehealth (dpeaa)DE-He213 Remote assessment (dpeaa)DE-He213 Clinical trials (dpeaa)DE-He213 Clinical outcome assessments (COA) (dpeaa)DE-He213 Eichinger, Katy J. aut Pasternak, Amy aut Yochai, Cara aut Krosschell, Kristin J. aut Enthalten in Orphanet journal of rare diseases London : BioMed Central, 2006 17(2022), 1 vom: 04. Jan. (DE-627)50900637X (DE-600)2225857-7 1750-1172 nnns volume:17 year:2022 number:1 day:04 month:01 https://dx.doi.org/10.1186/s13023-021-02165-w kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 17 2022 1 04 01
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author	Montes, Jacqueline
spellingShingle	Montes, Jacqueline misc Neuromuscular disorders misc Outcome measure misc Telehealth misc Remote assessment misc Clinical trials misc Clinical outcome assessments (COA) A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities
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topic_title	A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities Neuromuscular disorders (dpeaa)DE-He213 Outcome measure (dpeaa)DE-He213 Telehealth (dpeaa)DE-He213 Remote assessment (dpeaa)DE-He213 Clinical trials (dpeaa)DE-He213 Clinical outcome assessments (COA) (dpeaa)DE-He213
topic	misc Neuromuscular disorders misc Outcome measure misc Telehealth misc Remote assessment misc Clinical trials misc Clinical outcome assessments (COA)
topic_unstemmed	misc Neuromuscular disorders misc Outcome measure misc Telehealth misc Remote assessment misc Clinical trials misc Clinical outcome assessments (COA)
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title	A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities
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title_full	A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities
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author_browse	Montes, Jacqueline Eichinger, Katy J. Pasternak, Amy Yochai, Cara Krosschell, Kristin J.
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title_sort	post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities
title_auth	A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities
abstract	Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD. © The Author(s) 2021
abstractGer	Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD. © The Author(s) 2021
abstract_unstemmed	Abstract Recent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD. © The Author(s) 2021
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title_short	A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities
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author2	Eichinger, Katy J. Pasternak, Amy Yochai, Cara Krosschell, Kristin J.
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A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities

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