Literature DB >> 30901495

A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies.

Alberto J Espay1, Jeffrey M Hausdorff2,3,4, Álvaro Sánchez-Ferro5, Jochen Klucken6,7, Aristide Merola1, Paolo Bonato8, Serene S Paul9, Fay B Horak10,11, Joaquin A Vizcarra1, Tiago A Mestre12, Ralf Reilmann13,14,15, Alice Nieuwboer16, E Ray Dorsey17, Lynn Rochester18,19, Bastiaan R Bloem20, Walter Maetzler21.   

Abstract

Obtaining reliable longitudinal information about everyday functioning from individuals with Parkinson's disease (PD) in natural environments is critical for clinical care and research. Despite advances in mobile health technologies, the implementation of digital outcome measures is hindered by a lack of consensus on the type and scope of measures, the most appropriate approach for data capture (eg, in clinic or at home), and the extraction of timely information that meets the needs of patients, clinicians, caregivers, and health care regulators. The Movement Disorder Society Task Force on Technology proposes the following objectives to facilitate the adoption of mobile health technologies: (1) identification of patient-centered and clinically relevant digital outcomes; (2) selection criteria for device combinations that offer an acceptable benefit-to-burden ratio to patients and that deliver reliable, clinically relevant insights; (3) development of an accessible, scalable, and secure platform for data integration and data analytics; and (4) agreement on a pathway for approval by regulators, adoption into e-health systems and implementation by health care organizations. We have developed a tentative roadmap that addresses these needs by providing the following deliverables: (1) results and interpretation of an online survey to define patient-relevant endpoints, (2) agreement on the selection criteria for use of device combinations, (3) an example of an open-source platform for integrating mobile health technology output, and (4) recommendations for assessing readiness for deployment of promising devices and algorithms suitable for regulatory approval. This concrete implementation guidance, harmonizing the collaborative endeavor among stakeholders, can improve assessments of individuals with PD, tailor symptomatic therapy, and enhance health care outcomes.
© 2019 International Parkinson and Movement Disorder Society. © 2019 International Parkinson and Movement Disorder Society.

Entities:  

Keywords:  Parkinson's disease; mobile health technologies; remote monitoring; wearable technology

Mesh:

Year:  2019        PMID: 30901495      PMCID: PMC6520192          DOI: 10.1002/mds.27671

Source DB:  PubMed          Journal:  Mov Disord        ISSN: 0885-3185            Impact factor:   10.338


  20 in total

Review 1.  MDS research criteria for prodromal Parkinson's disease.

Authors:  Daniela Berg; Ronald B Postuma; Charles H Adler; Bastiaan R Bloem; Piu Chan; Bruno Dubois; Thomas Gasser; Christopher G Goetz; Glenda Halliday; Lawrence Joseph; Anthony E Lang; Inga Liepelt-Scarfone; Irene Litvan; Kenneth Marek; José Obeso; Wolfgang Oertel; C Warren Olanow; Werner Poewe; Matthew Stern; Günther Deuschl
Journal:  Mov Disord       Date:  2015-10       Impact factor: 10.338

2.  Time for a Patient-Driven Health Information Economy?

Authors:  Kenneth D Mandl; Isaac S Kohane
Journal:  N Engl J Med       Date:  2016-01-21       Impact factor: 91.245

3.  Self-reported activities of daily living and performance-based functional ability: a study of congruence among the oldest old.

Authors:  Marie Ernsth Bravell; Steven H Zarit; Boo Johansson
Journal:  Eur J Ageing       Date:  2011-06-24

4.  A 21st-Century Health IT System - Creating a Real-World Information Economy.

Authors:  Kenneth D Mandl; Isaac S Kohane
Journal:  N Engl J Med       Date:  2017-05-18       Impact factor: 91.245

5.  Technology-based assessment of motor and nonmotor phenomena in Parkinson disease.

Authors:  Aristide Merola; Andrea Sturchio; Stephanie Hacker; Santiago Serna; Joaquin A Vizcarra; Luca Marsili; Alfonso Fasano; Alberto J Espay
Journal:  Expert Rev Neurother       Date:  2018-10-08       Impact factor: 4.618

6.  Participatory design in Parkinson's research with focus on the symptomatic domains to be measured.

Authors:  J Artur Serrano; Frank Larsen; Tom Isaacs; Helen Matthews; Joy Duffen; Sara Riggare; Fulvio Capitanio; Joaquim J Ferreira; Josefa Domingos; Walter Maetzler; Holm Graessner
Journal:  J Parkinsons Dis       Date:  2015       Impact factor: 5.568

7.  Ambulatory activity in incident Parkinson's: more than meets the eye?

Authors:  Sue Lord; Alan Godfrey; Brook Galna; Dadirayi Mhiripiri; David Burn; Lynn Rochester
Journal:  J Neurol       Date:  2013-07-31       Impact factor: 4.849

Review 8.  A systematic review of the characteristics and validity of monitoring technologies to assess Parkinson's disease.

Authors:  Catarina Godinho; Josefa Domingos; Guilherme Cunha; Ana T Santos; Ricardo M Fernandes; Daisy Abreu; Nilza Gonçalves; Helen Matthews; Tom Isaacs; Joy Duffen; Ahmed Al-Jawad; Frank Larsen; Artur Serrano; Peter Weber; Andrea Thoms; Stefan Sollinger; Holm Graessner; Walter Maetzler; Joaquim J Ferreira
Journal:  J Neuroeng Rehabil       Date:  2016-03-12       Impact factor: 4.262

9.  Feasibility of large-scale deployment of multiple wearable sensors in Parkinson's disease.

Authors:  Ana Lígia Silva de Lima; Tim Hahn; Luc J W Evers; Nienke M de Vries; Eli Cohen; Michal Afek; Lauren Bataille; Margaret Daeschler; Kasper Claes; Babak Boroojerdi; Dolors Terricabras; Max A Little; Heribert Baldus; Bastiaan R Bloem; Marjan J Faber
Journal:  PLoS One       Date:  2017-12-20       Impact factor: 3.240

Review 10.  Technology in Parkinson's disease: Challenges and opportunities.

Authors:  Alberto J Espay; Paolo Bonato; Fatta B Nahab; Walter Maetzler; John M Dean; Jochen Klucken; Bjoern M Eskofier; Aristide Merola; Fay Horak; Anthony E Lang; Ralf Reilmann; Joe Giuffrida; Alice Nieuwboer; Malcolm Horne; Max A Little; Irene Litvan; Tanya Simuni; E Ray Dorsey; Michelle A Burack; Ken Kubota; Anita Kamondi; Catarina Godinho; Jean-Francois Daneault; Georgia Mitsi; Lothar Krinke; Jeffery M Hausdorff; Bastiaan R Bloem; Spyros Papapetropoulos
Journal:  Mov Disord       Date:  2016-04-29       Impact factor: 10.338

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  72 in total

Review 1.  Clinical and methodological challenges for assessing freezing of gait: Future perspectives.

Authors:  Martina Mancini; Bastiaan R Bloem; Fay B Horak; Simon J G Lewis; Alice Nieuwboer; Jorik Nonnekes
Journal:  Mov Disord       Date:  2019-05-02       Impact factor: 10.338

2.  Quantity and quality of gait and turning in people with multiple sclerosis, Parkinson's disease and matched controls during daily living.

Authors:  Vrutangkumar V Shah; James McNames; Martina Mancini; Patricia Carlson-Kuhta; Rebecca I Spain; John G Nutt; Mahmoud El-Gohary; Carolin Curtze; Fay B Horak
Journal:  J Neurol       Date:  2020-01-11       Impact factor: 4.849

3.  Examination of the reliability and feasibility of two smartphone applications to assess executive functioning in racially diverse older adults.

Authors:  Samantha E John; Sarah A Evans; Bona Kim; Petek Ozgul; David W Loring; Monica Parker; James J Lah; Allan I Levey; Felicia C Goldstein
Journal:  Neuropsychol Dev Cogn B Aging Neuropsychol Cogn       Date:  2021-08-12

4.  Quantitative mobility measures complement the MDS-UPDRS for characterization of Parkinson's disease heterogeneity.

Authors:  Emily J Hill; C Grant Mangleburg; Isabel Alfradique-Dunham; Brittany Ripperger; Amanda Stillwell; Hiba Saade; Sindhu Rao; Oluwafunmiso Fagbongbe; Rainer von Coelln; Arjun Tarakad; Christine Hunter; Robert J Dawe; Joseph Jankovic; Lisa M Shulman; Aron S Buchman; Joshua M Shulman
Journal:  Parkinsonism Relat Disord       Date:  2021-02-10       Impact factor: 4.891

5.  Will Artificial Intelligence Outperform the Clinical Neurologist in the Near Future? Yes.

Authors:  Roongroj Bhidayasiri
Journal:  Mov Disord Clin Pract       Date:  2021-04-12

Review 6.  Point of view: Wearable systems for at-home monitoring of motor complications in Parkinson's disease should deliver clinically actionable information.

Authors:  Behnaz Ghoraani; James E Galvin; Joohi Jimenez-Shahed
Journal:  Parkinsonism Relat Disord       Date:  2021-01-30       Impact factor: 4.891

7.  Does gait bout definition influence the ability to discriminate gait quality between people with and without multiple sclerosis during daily life?

Authors:  Vrutangkumar V Shah; James McNames; Graham Harker; Carolin Curtze; Patricia Carlson-Kuhta; Rebecca I Spain; Mahmoud El-Gohary; Martina Mancini; Fay B Horak
Journal:  Gait Posture       Date:  2020-11-25       Impact factor: 2.840

Review 8.  Precompetitive Consensus Building to Facilitate the Use of Digital Health Technologies to Support Parkinson Disease Drug Development through Regulatory Science.

Authors:  Diane Stephenson; Robert Alexander; Varun Aggarwal; Reham Badawy; Lisa Bain; Roopal Bhatnagar; Bastiaan R Bloem; Babak Boroojerdi; Jackson Burton; Jesse M Cedarbaum; Josh Cosman; David T Dexter; Marissa Dockendorf; E Ray Dorsey; Ariel V Dowling; Luc J W Evers; Katherine Fisher; Mark Frasier; Luis Garcia-Gancedo; Jennifer C Goldsack; Derek Hill; Janice Hitchcock; Michele T Hu; Michael P Lawton; Susan J Lee; Michael Lindemann; Ken Marek; Nitin Mehrotra; Marjan J Meinders; Michael Minchik; Lauren Oliva; Klaus Romero; George Roussos; Robert Rubens; Sakshi Sadar; Joseph Scheeren; Eiichi Sengoku; Tanya Simuni; Glenn Stebbins; Kirsten I Taylor; Beatrice Yang; Neta Zach
Journal:  Digit Biomark       Date:  2020-11-26

9.  Kinematic but not clinical measures predict falls in Parkinson-related orthostatic hypotension.

Authors:  Andrea Sturchio; Alok K Dwivedi; Luca Marsili; Aaron Hadley; Gabriele Sobrero; Dustin Heldman; Simona Maule; Leonardo Lopiano; Cristoforo Comi; Maurizio Versino; Alberto J Espay; Aristide Merola
Journal:  J Neurol       Date:  2020-09-26       Impact factor: 4.849

Review 10.  Approaches to Disease Modification for Parkinson's Disease: Clinical Trials and Lessons Learned.

Authors:  Albert Y Hung; Michael A Schwarzschild
Journal:  Neurotherapeutics       Date:  2020-11-17       Impact factor: 7.620

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