Treatment Burden in Parkinson's
Parkinson DiseaseParkinsonBackground: People with Parkinson's (PwP) have many symptoms including tremor, stiffness, slow movements, constipation, urinary incontinence and mental health issues. They are often older and have other long-term health conditions. PwP need to do many things to look after their health including manage multiple medications, attend healthcare appointments and lifestyle changes such as improving diet and exercise. The effort of looking after their health and its impact on them is termed 'treatment burden'. Some PwP need help from their family or friends (caregiver) to complete these tasks. Caregivers may also experience treatment burden themselves when caring for someone with Parkinson's. People's ability to manage treatment burden is termed 'capacity' and is influenced by physical, mental, social and economic factors. People are overburdened when the workload of looking after their health exceeds their capacity. This can lead to poor adherence with treatment, poor quality of life and worse health outcomes. Aim: To understand the factors that influence treatment burden and capacity in PwP and caregivers of PwP. Methods: Interviews with PwP and caregivers will identify factors that influence treatment burden and capacity. These factors will be explored further in a national survey for PwP and caregivers through Parkinson's UK. The investigators will form focus groups with PwP, caregivers, voluntary sector representatives, healthcare professionals, policy makers and managers through Parkinson's Excellence Networks to discuss and prioritise recommendations for change. Outcomes: The investigators will disseminate recommendations of ways to reduce treatment burden and improve future experiences of PwP and caregivers.
The Ontario Neurodegenerative Disease Research Initiative
Alzheimer DiseaseAmyotrophic Lateral Sclerosis3 moreThe Ontario Neurodegenerative Disease Research Initiative (ONDRI) is a province-wide collaboration studying dementia and how to improve the diagnosis and treatment of neurodegenerative diseases including: Alzheimer's disease (AD) Parkinson's disease (PD) amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) frontotemporal lobar degeneration (FTD) vascular cognitive impairment, resulting from stroke (VCI)
Post Market (Libra/LibraXP System) Deep Brain Stimulation (DBS) Parkinson's Disease Study
Parkinson's DiseaseThe objective of this study is to evaluate the effectiveness of Deep Brain Stimulation as an adjunctive treatment for reducing some of the symptoms of advanced, levodopa-responsive Parkinson's disease that are not adequately controlled with medication. It is the first study in Parkinson patients outside the US with a Deep Brain Stimulation system using constant current instead of constant voltage and using a lead with an active electrode tip.
Tele-diagnostics for Remote Parkinson's Monitoring
Parkinson's DiseaseThe purpose of this research study is to design, implement, and clinically assess a portable, user worn system for monitoring Parkinson's disease (PD) motor symptoms. The current standard in evaluating symptoms is the Unified Parkinson's Disease Rating Scale (UPDRS), a subjective, qualitative ranking system. The main goal of this research is to develop a quantitative system, Kinesia HomeView, to assess tremor as well as different features of bradykinesia in a home based system which can capture those symptom changes over the course of a day and aid in evaluating treatment protocol efficacy.
Kinetic Tremor in Parkinsons Disease: Its Course Under Pramipexole (Mirapexin®) Treatment and Impact...
Parkinson DiseaseThe study will compare the effect of pramipexole on different types of tremor and particularly kinetic tremor in early and advanced Parkinson's disease patients and will evaluate the course of tremor measured with spiralometry under pramipexole treatment.
Dance Exercise as Novel Complementary Therapy for Parkinson's Disease
Parkinsons DiseaseThe purpose of this study is to gather data to see if so-called enriched forms of exercise programs such as dance is more effective in improving balance and quality of life in patients with idiopathic Parkinson's disease than regular exercise programs that are currently provided by physical therapists.
First Presentation of Parkinson Disease Patients to Neurologist
Parkinson DiseaseIn this study information is gathered about the treatment of Parkinson patients who present themselves in a neurological practice for the first time
Follow Up Study for Treatment of Parkinson's Disease With Deep Brain Stimulation
Parkinson DiseaseFollow up of patients enrolled in CSP 468, a study of deep brain stimulation treatment for Parkinson's disease
Shanghai Parkinson's Study
Parkinson's DiseaseBackground: Parkinson disease (PD) is the second most prevalent neurodegenerative disease, affecting more than 1 percent of the elderly population in the United States and other Western countries. Although effective treatments can alleviate symptoms in early PD, no cure or treatment slowing disease progression has been identified, and patients will eventually develop severe physical and mental disabilities and often die of complications. More research is needed on the causes of and appropriate preventive strategies for PD. The Shanghai Women s Health Study (SWHS) was established 10 years ago by investigators from the Vanderbilt University, the Shanghai Cancer Institute (SCI) and the National Cancer Institute (NCI) of the US. Their primary aim was to examine several unique dietary hypotheses on cancer among Chinese women. Researchers from the National Institute of Environmental Health Sciences and SWHS investigators are now interested in studying PD patients from SWHS to evaluate biological and environmental factors that may have put them at risk for PD. Objectives: To initiate a long-term prospective study on PD in Chinese women from the Shanghai Women s Health Study. To examine a set of biological and environmental factors that may raise or lower risk of developing PD. Eligibility: - All participants of the SWHS cohort are eligible. Design: Researchers will contact self-reported PD cases from the SWHS, confirm (or reject) the self-report, and invite them to a clinical examination at a coordinating hospital in Shanghai. Cases that confirm the self-report will be invited to visit the coordinating hospital for clinical examinations, including a PD clinical workup, blood and urine collections, a cognitive assessment and relevant neuropsychological testing, and an interview on additional risk factor exposures that are not available from baseline surveys. For those who could not participate in the clinical examination, researchers will ask for a few details about the diagnosis and treatment history and ask for permission to obtain medical records relevant to PD diagnosis from government or hospital agencies. For self-reported PD cases who are now deceased, researchers will follow a similar procedure by asking for consent and help from the next-of-kin.
European Compliance Study in Parkinson's Disease
Parkinson's DiseaseIn both symptomatic and asymptomatic disease, only about half of medicines are taken as prescribed1. Relatively little is known about how patients with Parkinson's disease take their medication. One of the challenges in the management of Parkinson's disease is the prevention and treatment of involuntary movements2,3 and wild fluctuations between being mobile and able to function against being slow, stiff and unable to move which recurs as a delayed (several years) effect of taking antiparkinson medication. One theory of why this occurs is that it is due to pulsatile rather than continuous delivery of medication to the brain4. If patients take their medicines erratically and irregularly, this causes more fluctuations in blood and therefore brain drug levels may prime patients for complications in the future. This project will define the extent of irregular medication taking in Parkinson's disease, examine associated clinical and demographic characteristics and examine the ease of adherence to different drug regimes. Knowledge of therapy adherence will help support patients in using their medicines to best effect. In the present document the terms compliance and adherence are used with equal meaning.