Journal of Parkinson's Disease - Volume 11, issue s1

Authors: Mirelman, Anat | Dorsey, E. Ray | Brundin, Patrik | Bloem, Bastiaan R.

Article Type: Editorial

Keywords: Neurological examination, expertise, clinical skills, Parkinson’s disease, movement disorders

DOI: 10.3233/JPD-219002

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S1-S3, 2021

Authors: Riggare, Sara | Stamford, Jon | Hägglund, Maria

Article Type: Review Article

Abstract: Digital health promises to improve healthcare, health, and wellness through the use of digital technologies. The purpose of this commentary is to review and discuss the field of digital health for Parkinson’s disease (PD) focusing on the needs, expectations, and wishes of people with PD (PwP). Our analysis shows that PwP want to use digital technologies to actively manage the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition. Current digital health projects focusing on PD, however, does not live up to the expectations of PwP. We conclude that for digital …health to reach its full potential, the right of PwP to access their own data needs to be recognised, PwP should routinely receive personalised feedback based on their data, and active involvement of PwP as an equal partner in digital health development needs to be the norm. Show more

Keywords: Digital health, patient perspectives, digital technology, patient empowerment

DOI: 10.3233/JPD-202408

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S5-S10, 2021

Authors: Shalash, Ali | Spindler, Meredith | Cubo, Esther

Article Type: Review Article

Abstract: Telemedicine programs are particularly suited to evaluating patients with Parkinson’s disease (PD) and other movement disorders, primarily because much of the physical exam findings are visual. Telemedicine uses information and communication technologies to overcome geographical barriers and increase access to healthcare service. It is particularly beneficial for rural and underserved communities, groups that traditionally suffer from lack of access to healthcare. There is a growing evidence of the feasibility of telemedicine, cost and time savings, patients’ and physicians’ satisfaction, and its outcome and impact on patients’ morbidity and quality of life. In addition, given the unusual current situation with the …COVID-19 pandemic, telemedicine has offered the opportunity to address the ongoing healthcare needs of patients with PD, to reduce in-person clinic visits, and human exposures (among healthcare workers and patients) to a range of infectious diseases including COVID-19. However, there are still several challenges to widespread implementation of telemedicine including the limited performance of parts of the neurological exam, limited technological savvy, fear of loss of a personal connection, or uneasiness about communicating sensitive information. On the other hand, while we are facing the new wave of COVID-19 pandemic, patients and clinicians are gaining increasing experience with telemedicine, facilitating equity of access to specialized multidisciplinary care for PD. This article summarizes and reviews the current state and future directions of telemedicine from a global perspective. Show more

Keywords: Telemedicine, telehealth, movement disorders, Parkinson’s disease

DOI: 10.3233/JPD-202411

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S11-S18, 2021

Authors: van Gastel, Bernard E. | Jacobs, Bart | Popma, Jean

Article Type: Review Article

Abstract: This paper describes an advanced form of pseudonymisation in a large cohort study on Parkinson’s disease, called Personalized Parkinson Project (PPP). The study collects various forms of biomedical data of study participants, including data from wearable devices with multiple sensors. The participants are all from the Netherlands, but the data will be usable by research groups worldwide on the basis of a suitable data use agreement. The data are pseudonymised, as required by Europe’s General Data Protection Regulation (GDPR). The form of pseudonymisation that is used in this Parkinson project is based on cryptographic techniques and is ‘polymorphic’: it gives …each participating research group its own ‘local’ pseudonyms. Still, the system is globally consistent, in the sense that if one research group adds data to PPP under its own local pseudonyms, the data become available for other groups under their pseudonyms. The paper gives an overview how this works, without going into the cryptographic details. Show more

Keywords: Computer security, privacy, big data, data protection

DOI: 10.3233/JPD-202431

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S19-S25, 2021

Authors: Larson, Danielle N. | Schneider, Ruth B. | Simuni, Tanya

Article Type: Review Article

Abstract: The COVID-19 pandemic forced the abrupt and rapid expansion of an alternative care model that embraces the use of video-based visits in the care of persons with Parkinson’s disease. Video-based visits not only eliminate the risk of infection but also reduce geography- and disability-related barriers to accessing specialist care. Research has established that they are feasible, acceptable to persons with Parkinson’s disease and patient-centered. In the Unites States, the relaxation of licensure requirements, adoption of reimbursement parity and investment in telemedicine infrastructure has enabled the rapid growth of video-based visits during the COVID-19 pandemic. Now, we must turn our attention …to ensuring that progress made in expanding access to video-based care is not lost and expanded worldwide. More work is needed to identify the optimal video-based care model, establish best practices, and ensure equitable access to care. Show more

Keywords: Parkinson’s disease, telemedicine, remote consultation, coronavirus

DOI: 10.3233/JPD-202381

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S27-S34, 2021

Authors: Del Din, Silvia | Kirk, Cameron | Yarnall, Alison J. | Rochester, Lynn | Hausdorff, Jeffrey M.

Article Type: Review Article

Abstract: The increasing prevalence of neurodegenerative conditions such as Parkinson’s disease (PD) and related mobility issues places a serious burden on healthcare systems. The COVID-19 pandemic has reinforced the urgent need for better tools to manage chronic conditions remotely, as regular access to clinics may be problematic. Digital health technology in the form of remote monitoring with body-worn sensors offers significant opportunities for transforming research and revolutionizing the clinical management of PD. Significant efforts are being invested in the development and validation of digital outcomes to support diagnosis and track motor and mobility impairments “off-line”. Imagine being able to remotely assess …your patient, understand how well they are functioning, evaluate the impact of any recent medication/intervention, and identify the need for urgent follow-up before overt, irreparable change takes place? This could offer new pragmatic solutions for personalized care and clinical research. So the question remains: how close are we to achieving this? Here, we describe the state-of-the-art based on representative papers published between 2017 and 2020. We focus on remote (i.e., real-world, daily-living) monitoring of PD using body-worn sensors (e.g., accelerometers, inertial measurement units) for assessing motor symptoms and their complications. Despite the tremendous potential, existing challenges exist (e.g., validity, regulatory) that are preventing the widespread clinical adoption of body-worn sensors as a digital outcome. We propose a roadmap with clear recommendations for addressing these challenges and future directions to bring us closer to the implementation and widespread adoption of this important way of improving the clinical care, evaluation, and monitoring of PD. Show more

Keywords: Parkinson’s disease, remote monitoring, real-world, wearables, motor symptoms, accelerometer

DOI: 10.3233/JPD-202471

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S35-S47, 2021

Authors: Little, Max A.

Article Type: Review Article

Abstract: Parkinson’s disease is a complex and heterogeneous condition, and there are many gaps in the medical community’s scientific and practical understanding of the disease. Closing these gaps relies on objective data about symptoms and signs, collected over long durations. Smartphones contain sensor devices which can be used to remotely capture behavioral signals. From these signals, computational algorithms can distill metrics of symptom severity and progression. This brief review introduces the main concepts of the discipline, addressing the experimental, hardware and software logistics, and computational analysis. The article finishes with an exploration of future prospects for the technology.

Keywords: Wearables, sensors, smartphones, algorithms, digital signals

DOI: 10.3233/JPD-202453

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S49-S53, 2021

Authors: Simonet, Cristina | Noyce, Alastair J.

Article Type: Review Article

Abstract: Technology has an increasing presence and role in the management of Parkinson’s disease. Whether embraced or rebuffed by patients and clinicians, this is an undoubtedly growing area. Wearable sensors have received most of the attention so far. This review will focus on technology integrated into the home setting; from fixed sensors to automated appliances, which are able to capture information and have the potential to respond in an unsupervised manner. Domotics also have the potential to provide ‘real world’ context to kinematic data and therapeutic opportunities to tackle challenging motor and non-motor symptoms. Together with wearable technology, domotics have the …ability to gather long-term data and record discrete events, changing the model of the cross-sectional outpatient assessment. As clinicians, our ultimate goal is to maximise quality of life, promote autonomy, and personalise care. In these respects, domotics may play an essential role in the coming years. Show more

Keywords: Domotics, smart home, technology, unsupervised monitoring, Parkinson’s disease

DOI: 10.3233/JPD-202398

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S55-S63, 2021

Authors: Theodoros, Deborah

Article Type: Review Article

Abstract: Communication and swallowing disorders are highly prevalent in people with Parkinson’s disease (PD). The negative impact of these disorders on the quality of life of the person with PD and their families cannot be underestimated. Despite a demand for speech-language pathology services to support people with PD, many barriers to services exist. Telerehabilitation provides an alternate and complementary approach to in-person therapy that is patient-centered, enables timely assessment and intervention, and facilitates continuity of care throughout the course of the disease. This review explores the telerehabilitation applications designed for the management of the communication and swallowing disorders in PD, addresses …the benefits and challenges of telerehabilitation, identifies future research directions, and highlights the potential of new technologies to enhance the management of communication and swallowing disorders and quality of life for people with PD. Show more

Keywords: Dysarthria, language disorders, Parkinson’s disease, speech-language pathology, swallowing disorders, telerehabilitation

DOI: 10.3233/JPD-202414

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S65-S70, 2021

Authors: Hanein, Yael | Mirelman, Anat

Article Type: Review Article

Abstract: Sleep disturbances are prevalent in neurodegenerative diseases in general, and in Parkinson’s disease (PD) in particular. Recent evidence points to the clinical value of sleep in disease progression and improving quality of life. Therefore, monitoring sleep quality in an ongoing manner at the convenience of one’s home has the potential to improve clinical research and to contribute to significantly better personalized treatment. Further, precise mapping of sleep patterns of each patient can contribute to a better understanding of the disease, its progression and the appropriate medical treatment. Here we review selective, state-of-the-art, home-based devices for assessing sleep and sleep related …disorders. We highlight the large potential as well as the main challenges. In particular, we discuss medical validity, standardization and regulatory concerns that currently impede widespread clinical adoption of existing devices. Finally, we propose a roadmap with the technological and scientific steps that are required to impact PD research and treatment. Show more

Keywords: Movement disorders, sleep disorders, wearable electrophysiology, skin electronics, flexible electronics, smart skin

DOI: 10.3233/JPD-202412

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S71-S76, 2021

Authors: Christie, Richard H. | Abbas, Anzar | Koesmahargyo, Vidya

Article Type: Review Article

Abstract: Medication non-adherence during clinical trials is an ongoing challenge that can result in insufficient safety and efficacy data. For patients with Parkinson’s disease and other neurological disorders, symptomatology such as forgetfulness compounds traditional obstacles to adherence. Today, sponsors and clinical study sites can call upon various technology tools that improve adherence by monitoring and confirming dosage in near real-time. These tools have the potential to improve the quality of data gleaned from these studies.

Keywords: Digital phenotyping, Parkinson’s disease, remote measurement, treatment adherence

DOI: 10.3233/JPD-212537

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S77-S81, 2021

Authors: Sibley, Krista G. | Girges, Christine | Hoque, Ehsan | Foltynie, Thomas

Article Type: Review Article

Abstract: Remote and objective assessment of the motor symptoms of Parkinson’s disease is an area of great interest particularly since the COVID-19 crisis emerged. In this paper, we focus on a) the challenges of assessing motor severity via videos and b) the use of emerging video-based Artificial Intelligence (AI)/Machine Learning techniques to quantitate human movement and its potential utility in assessing motor severity in patients with Parkinson’s disease. While we conclude that video-based assessment may be an accessible and useful way of monitoring motor severity of Parkinson’s disease, the potential of video-based AI to diagnose and quantify disease severity in the …clinical context is dependent on research with large, diverse samples, and further validation using carefully considered performance standards. Show more

Keywords: Parkinson’s disease, video, artificial intelligence, machine learning

DOI: 10.3233/JPD-202402

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S83-S93, 2021

Authors: Ellis, Terry D. | Earhart, Gammon M.

Article Type: Review Article

Abstract: Digital therapeutics, treatments delivered remotely and enabled by modern technology, facilitate the provision of personalized, evidence-based, interdisciplinary interventions to manage the complexities associated with Parkinson’s disease. In the context of the COVID-19 pandemic, the need for digital therapeutics has arguably never been greater. However, despite new advances in technology and a heightened interest due to the pandemic, digital therapeutics remain underdeveloped and underutilized. In this paper, we briefly review practical applications and emerging advances in digital therapeutic platforms that target motor and non-motor signs and healthy lifestyle behaviors such as regular exercise, a healthful diet and optimal sleep hygiene habits. …Future applications which could transform personalized self-management and patient care are presented. Opportunities, drawbacks and barriers to access are discussed. Show more

Keywords: Parkinson’s disease, digital therapeutics, virtual coach, mobile health

DOI: 10.3233/JPD-202407

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S95-S101, 2021

Authors: Stephenson, Diane | Badawy, Reham | Mathur, Soania | Tome, Maria | Rochester, Lynn

Article Type: Review Article

Abstract: The burden of Parkinson’s disease (PD) continues to grow at an unsustainable pace particularly given that it now represents the fastest growing brain disease. Despite seminal discoveries in genetics and pathogenesis, people living with PD oftentimes wait years to obtain an accurate diagnosis and have no way to know their own prognostic fate once they do learn they have the disease. Currently, there is no objective biomarker to measure the onset, progression, and severity of PD along the disease continuum. Without such tools, the effectiveness of any given treatment, experimental or conventional cannot be measured. Such tools are urgently needed …now more than ever given the rich number of new candidate therapies in the pipeline. Over the last decade, millions of dollars have been directed to identify biomarkers to inform progression of PD typically using molecular, fluid or imaging modalities. These efforts have produced novel insights in our understanding of PD including mechanistic targets, disease subtypes and imaging biomarkers. While we have learned a lot along the way, implementation of robust disease progression biomarkers as tools for quantifying changes in disease status or severity remains elusive. Biomarkers have improved health outcomes and led to accelerated drug approvals in key areas of unmet need such as oncology. Quantitative biomarker measures such as HbA1c a standard test for the monitoring of diabetes has impacted patient care and management, both for the healthcare professionals and the patient community. Such advances accelerate opportunities for early intervention including prevention of disease in high-risk individuals. In PD, progression markers are needed at all stages of the disease in order to catalyze drug development—this allows interventions aimed to halt or slow disease progression (very early) but also facilitates symptomatic treatments at moderate stages of the disease. Recently, attention has turned to the role of digital health technologies to complement the traditional modalities as they are relatively low cost, objective and scalable. Success in this endeavor would be transformative for clinical research and therapeutic development. Consequently, significant investment has led to a number of collaborative efforts to identify and validate suitable digital biomarkers of disease progression. Show more

Keywords: Parkinson’s disease, digital health technologies, biomarkers, regulatory science, drug development, clinical research, collaborations

DOI: 10.3233/JPD-202428

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S103-S109, 2021

Authors: Sacks, Leonard | Kunkoski, Elizabeth

Article Type: Review Article

Abstract: Digital health technology (DHT), including wearable and environmental sensors, video cameras and other electronic tools, has provided new opportunities for the measurement of movement and functionality in Parkinson’s disease. Compared to current standards for evaluation of the disease (MDS-UPDRS), DHT may offer new possibilities for more frequent objective measurements of the duration, severity and frequency of disease manifestations over time, that may provide more information than periodic clinic visits. However, DHT measurements are only scientifically and medically useful if they are accurate, reliable and clinically meaningful. Verification and validation, also known as analytical validation and clinical validation, of DHT performance …is important to ensure the accuracy and precision of measurements, and the specificity of findings. Given the wide range of clinical manifestations associated with Parkinson’s disease and the many tools and metrics to assess them, the challenge is to identify those that may represent a standard for use in clinical trials, and to confirm when digital measurements succeed or fall short of capturing meaningful benefits during drug development. Show more

Keywords: Parkinson’s disease, digital health technology, wearable, mobile technology, drug development, FDA, regulatory

DOI: 10.3233/JPD-202416

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S111-S115, 2021

Authors: Landers, Matt | Saria, Suchi | Espay, Alberto J.

Article Type: Review Article

Abstract: The use of artificial intelligence (AI) to help diagnose and manage disease is of increasing interest to researchers and clinicians. Volumes of health data are generated from smartphones and ubiquitous inexpensive sensors. By using these data, AI can offer otherwise unobtainable insights about disease burden and patient status in a free-living environment. Moreover, from clinical datasets AI can improve patient symptom monitoring and global epidemiologic efforts. While these applications are exciting, it is necessary to examine both the utility and limitations of these novel analytic methods. The most promising uses of AI remain aspirational. For example, defining the molecular subtypes …of Parkinson’s disease will be assisted by future applications of AI to relevant datasets. This will allow clinicians to match patients to molecular therapies and will thus help launch precision medicine. Until AI proves its potential in pushing the frontier of precision medicine, its utility will primarily remain in individualized monitoring, complementing but not replacing movement disorders specialists. Show more

Keywords: Artificial intelligence, big data, machine learning, Parkinson’s disease

DOI: 10.3233/JPD-212545

Citation: Journal of Parkinson's Disease, vol. 11, no. s1, pp. S117-S122, 2021