A5020560980- Parkinson's Disease Mechanisms and Treatments
- Health Systems, Economic Evaluations, Quality of Life
- Mental Health and Patient Involvement
- Neurological disorders and treatments
- Patient Satisfaction in Healthcare
- Botulinum Toxin and Related Neurological Disorders
- Patient-Provider Communication in Healthcare
- Health Policy Implementation Science
- Autism Spectrum Disorder Research
- Cerebral Palsy and Movement Disorders
- Urticaria and Related Conditions
- Health disparities and outcomes
- Dementia and Cognitive Impairment Research
- Dermatology and Skin Diseases
- Chronic Disease Management Strategies
- Ethics in Clinical Research
- Geriatric Care and Nursing Homes
- Clinical practice guidelines implementation
- Telemedicine and Telehealth Implementation
- Primary Care and Health Outcomes
Parkinson's Foundation
2020-2024
Abstract Patients’ experiences of their diagnosis, condition, and treatment (including the impact on lives), surrounding expectations care, are becoming increasingly important in shaping healthcare systems that meet evolving needs priorities different patient communities over time; this is an ongoing goal all stakeholders. Current approaches capture with data fragmented, resulting duplication effort, numerous requests for information, increased burden. Application experience to inform...
Qualitative research on patient experiences in early-stage Parkinson's disease (PD) is limited. It increasingly acknowledged that clinical outcome assessments used trials do not fully capture the range of symptoms/impacts are meaningful to people with PD. We aimed conceptualize experience PD and identify, from perspective, those cardinal which might be more useful measure trials. In a mixed-methods analysis, 50 nine relatives were interviewed. Study design results interpretation led by...
Abstract Background Previous research on concepts that are important to people living with early-stage Parkinson’s indicated ‘ functional ’ slowness, fine motor skills, and subtle gait abnormalities cardinal not comprehensively captured by existing patient-reported outcome (PRO) instruments used in clinical practice assess symptoms daily functioning within this patient population. We sought develop novel PRO address unmet need. Methods instrument development was led a multidisciplinary...
Despite data supporting the rapid adoption of telehealth in delivery clinical care North America, implementation visits research studies has faced critical barriers. These challenges include: (1) variations state licensure requirements for telehealth; (2) disparities access to among disadvantaged populations; (3) lack consistency individual Investigational Review Boards (IRBs). Each barrier prevents systematic conversion protocols include visits. The Parkinson's Foundation and members...
Abstract Background Working with patients through meaningful patient engagement (PE) and incorporating experience data (PXD) is increasingly important in medicines medical device development. However, PE the planning, organization, generation, interpretation of PXD within regulatory health technology assessment (HTA) decision-making processes remains challenging. We conducted a global review landscape to identify evolving resources by geography support highlight potential integration HTA....
Abstract The wide application of patient engagement and its associated benefits has increased across government, academic pharmaceutical research. However, neither an identified standard practice for the process engagement, nor utilization common metrics to assess outcomes, exists. Parkinson's Foundation developed a framework within research drug development sectors. This approach was over course several years through assessing literature, acquiring feedback from researchers people with...
Abstract Background In support of UCB pharmaceutical research programs, the aim this was to implement a novel process for patient involvement in multidisciplinary group co-create clinical outcome assessment strategy accurately reflect experience people living with early-stage Parkinson’s. Patient experts were an integral part decision-making patient-reported (PRO) and instrument development. Methods partnership two organizations (Parkinson’s UK Parkinson’s Foundation), 6 recruited into...
Background: Family caregivers of people living with dementia have high caregiver strain and poor health consequences. Limited research exists on Lewy body (LBD) their specific comorbidities. This study aimed to (1) identify the prevalence self-reported comorbidities among LBD (2) contextualize these findings historical data persons Alzheimer disease associated disorders (ADADs). Methods: In a national, online survey, family completed Self-Administered Comorbidity Questionnaire we compared...
The movement toward prevention trials in people at-risk for Parkinson’s is rapidly becoming a reality. authors of this article include genetically advocate with the LRRK2 G2019S variant and two patients rapid eye sleep behavior disorder (RBD), one whom has now been diagnosed disease (PD). These participated as speakers, panelists, moderators “Planning Prevention Parkinson’s: A Trial Design Forum” hosted by Massachusetts General Hospital 2021 2022....
What is this summary about? Clinical studies test whether a new treatment safe and if the works in people who have particular condition. Most current questionnaires used clinical investigating Parkinson's measure symptoms been diagnosed for many years. This means that these existing may not be useful living with early-stage Parkinson's, where experienced can quite different to later stages, or show helpful them. The most common are involuntary shaking of parts body ("tremor"), slow movement...
To evaluate the extent to which legacy patient-reported outcome (PRO) instruments are fit for purpose use in trials involving people with early-stage (Stages 1 and 2) Parkinson's disease (PD).