ObjectivePatient-centered clinical trial design and execution is becoming increasingly important. No best practice guidelines exist despite a key stakeholder declaration to create more effective engagement models. This study aims to gain a better understanding of attitudes and practices for engaging patient groups so that actionable recommendations may be developed.MethodsIndividuals from industry, academic institutions, and patient groups were identified through Clinical Trials Transformation Initiative and Drug Information Association rosters and mailing lists. Objectives, practices, and perceived barriers related to engaging patient groups in the planning, conduct, and interpretation of clinical trials were reported in an online survey. Descriptive and inferential statistical analysis of survey data followed a literature review to inform survey questions.ResultsSurvey respondents (n = 179) valued the importance of involving patient groups in research; however, patient group respondents valued their contributions to research protocol development, funding acquisition, and interpretation of study results more highly than those contributions were valued by industry and academic respondents (all p < .001). Patient group respondents placed higher value in open communications, clear expectations, and detailed contract execution than did non–patient group respondents (all p < .05). Industry and academic respondents more often cited internal bureaucratic processes and reluctance to share information as engagement barriers than did patient group respondents (all p < .01). Patient groups reported that a lack of transparency and understanding of the benefits of collaboration on the part of industry and academia were greater barriers than did non–patient group respondents (all p< .01).ConclusionsDespite reported similarities among approaches to engagement by the three stakeholder groups, key differences exist in perceived barriers and benefits to partnering with patient groups among the sectors studied. This recognition could inform the development of best practices for patient-centered clinical trial design and execution. Additional research is needed to define and optimize key success factors.

Emerging evidence shows that dance can provide both physical and non-physical benefits for people living with Parkinson's disease (PD). The suspension of in-person dance classes during the COVID-19 pandemic necessitated a transition to remote provision via live and recorded digital media. An online survey explored accessibility of and engagement with home-based dance programs, as well as potential benefits and processes involved in participation. The survey was co-developed by researchers and dance program providers, with input from people with PD and physiotherapists. Responses were collected from 276 individuals, including 178 current users of home-based programs, the majority of whom were participating at least once per week. Among respondents not currently using digital resources, lack of knowledge and motivation were the primary barriers. Most participants (94.9%) reported that home based practise provided some benefits, including physical (e.g., balance, posture) and non-physical (e.g., mood, confidence) improvements. Participants valued the convenience and flexibility of digital participation, but noted limitations including reductions in social interaction, support from instructors and peers, and motivation. There was a strong preference (70.8%) for continuing with home-based practise alongside in-person classes in the future. The results indicate that at-home dance is accessible and usable for people with PD, and that some of the previously-reported benefits of dance may be replicated in this context. Digital dance programs will likely remain a key element of future provision for people with PD, and the present findings will inform further development of resources and research into mechanisms and outcomes of home-based dance participation.

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Aim: To determine the effectiveness of a targeted dance intervention to improve walking speed for people with Parkinson disease (PD) by increasing motor motivation. Materials & methods: 11 participants with PD participated in a 6-week pilot study in which they learned a contemporary dance composed of walking steps and designed to mimic everyday walking. 1 h classes occurred twice-weekly. Results: Pre- and post-intervention assessments revealed a significant increase in gait speed (t9 = 3.30; p = 0.009), cadence (t9 = 2.345; p = 0.044), and stride length (t9 = 3.757; p = 0.005), and a significant decrease (improvement) in single support time variability (t9 = -2.744; p = 0.022). There were no significant changes in other measures of gait variability nor in motor symptoms, mood and anxiety, extent of life-space mobility, or quality of life. No adverse events were reported. Conclusion: Joywalk provides preliminary evidence that a targeted physical intervention for people with PD may specifically counter bradykinesia.

Background Dance provides a range of beneficial effects for older adults including individuals with age-related neurological conditions such as Parkinson’s disease (PD). The COVID-19 pandemic accelerated the development of at-home dance programs delivered digitally through live and pre-recorded media, but little is known about how participants may engage with and benefit from these resources. Objective This study explored experiences and potential benefits of digital dance participation among healthy older adults and people with PD. Methods An online survey consisting of fixed-choice and open questions was designed in collaboration with dance program providers and distributed between June and November 2020. Results Healthy older adults (N = 149) and people with PD (N = 178) participating in at-home dance programs reported frequent engagement and a range of benefits. People with PD reported greater levels of motor (e.g., ease of movement, balance) than non-motor (e.g., energy, confidence) outcomes, while healthy older adults reported similar numbers of motor and non-motor outcomes. Positive outcomes were associated with the use of movement imagery during dance in both groups, while singing was associated with benefits in people with PD and vocalising was associated with benefits in older adults. At-home dance resources were found to offer convenience and flexibility, but participants missed the interaction, support, and routine provided by in-person classes. The majority expressed a preference to continue with both digital and in-person participation in the future. Qualitative analysis of participants’ comments further revealed that digital participation could help to maintain connection and well-being, as well as identifying further considerations for improving accessibility and facilitating digital engagement. Conclusions At-home dance appears to be accessible, engaging, and potentially beneficial for older adults and people with PD, although barriers to participation should be addressed. Digital resources will be increasingly important to enable cost-effective, large-scale provision of home-based therapeutic activities.