Practical approaches to inclusive recruitment practices in Parkinson's disease research.

Parkinson's disease (PD) is a prevalent neurodegenerative disorder affecting millions globally. It encompasses both motor and non-motor symptoms, with a notable impact on patients' quality of life. Electroencephalogram (EEG) is a non-invasive tool that is increasingly utilized to investigate neural mechanisms in PD, identify early diagnostic markers, and assess therapeutic responses. The data were sourced from the Science Citation Index Expanded within the Web of Science Core Collection database, focusing on publications related to EEG research in PD from 2004 to 2023. A comprehensive bibliometric analysis was conducted using CiteSpace and VOSviewer software. The analysis began with an evaluation of the selected publications, identifying leading countries, institutions, authors, and journals, as well as co-cited references, to summarize the current state of EEG research in PD. Keywords are employed to identify research topics that are currently of interest in this field through the analysis of high-frequency keyword co-occurrence and cluster analysis. Finally, burst keywords were identified to uncover emerging trends and research frontiers in the field, highlighting shifts in interest and identifying future research directions. A total of 1,559 publications on EEG research in PD were identified. The United States, Germany, and England have made notable contributions to the field. The University of London is the leading institution in terms of publication output, with the University of California closely following. The most prolific authors are Brown P, Fuhr P, and Stam C In terms of total citations and per-article citations, Stam C has the highest number of citations, while Brown P has the highest H-index. In terms of the total number of publications, Clinical Neurophysiology is the leading journal, while Brain is the most highly cited. The most frequently cited articles pertain to software toolboxes for EEG analysis, neural oscillations, and PD pathophysiology. Through analyzing the keywords, four research hotspots were identified: research on the neural oscillations and connectivity, research on the innovations in EEG Analysis, impact of therapies on EEG, and research on cognitive and emotional assessments. This bibliometric analysis demonstrates a growing global interest in EEG research in PD. The investigation of neural oscillations and connectivity remains a primary focus of research. The application of machine learning, deep learning, and task analysis techniques offers promising avenues for future research in EEG and PD, suggesting the potential for advancements in this field. This study offers valuable insights into the major research trends, influential contributors, and evolving themes in this field, providing a roadmap for future exploration.

Adapting to post-COVID19 research in Parkinson's disease: Lessons from a multinational experience

Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease: The FIRE-UP PD study

Enhancing the interactions between study participants, clinicians, and investigators is imperative for advancing Parkinson's disease (PD) research. The Canadian Open Parkinson Network (C-OPN) stands as a nationwide endeavor, connecting the PD community with ten accredited universities and movement disorders research centers spanning, at the time of this analysis, British Columbia, Alberta, Ontario, and Quebec. Our aim is to showcase C-OPN as a paradigm for bolstering national collaboration to accelerate PD research and to provide an initial overview of already collected data sets. The C-OPN database comprises de-identified data concerning demographics, symptoms and signs, treatment approaches, and standardized assessments. Additionally, it collects venous blood-derived biomaterials, such as for analyses of DNA, peripheral blood mononuclear cells (PBMC), and serum. Accessible to researchers, C-OPN resources are available through web-based data management systems for multi-center studies, including REDCap. As of November 2023, the C-OPN had enrolled 1,505 PD participants. The male-to-female ratio was 1.77:1, with 83% (n = 1098) residing in urban areas and 82% (n = 1084) having pursued post-secondary education. The average age at diagnosis was 60.2±10.3 years. Herein, our analysis of the C-OPN PD cohort encompasses environmental factors, motor and non-motor symptoms, disease management, and regional differences among provinces. As of April 2024, 32 research projects have utilized C-OPN resources. C-OPN represents a national platform promoting multidisciplinary and multisite research that focuses on PD to promote innovation, exploration of care models, and collaboration among Canadian scientists.

Designing the Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease study

Older participants are frequently excluded from Parkinson's disease research

LRRK2 and the new era of Parkinson's disease research

Panic disorder has an elevated prevalence in Parkinson's disease (PD). To explore the basis for this co-occurrence, the familial aggregation of panic disorder was examined in patients with PD. Probands and relatives of patients with PD and panic disorder (PD-PANIC; N=20, N=115) and control probands with PD and no active psychiatric illness (PD-NA; N=17, N=108) were interviewed by phone, using a structured interview to determine panic status. Lifetime prevalence of panic and “panic-like” disorders was higher in PD-PANIC than in PD-NA relatives. Panic and “panic-like” disorders are familial disorders in PD.

Proteomics in human Parkinson's disease research

From film to philanthropy

<h3>Objective:</h3> To bridge gaps in scientific knowledge among an underserved community by utilizing stakeholder engagement in Parkinson’s disease (PD) research. <h3>Background:</h3> Native Hawaiians (NH) are affected by higher rates of morbidity and mortality, than the overall population in Hawai‘i. Distrust amongst the NH community continues to be a barrier to research participation due to a history of unethical research.^1,2 Stakeholder engagement in the research process is an approach that ensures the relevance and translation of research to real world practice. Engagement builds trust and promotes appropriate inclusivity among diverse communities.³ Recently there has been increasing attention to racial disparities of PD globally.⁴ However, there is limited evidence on the best framework for multi-stakeholder engagement of underrepresented patient populations⁵ in PD research.⁶ <h3>Design/Methods:</h3> We adapted a community-based participatory research (CBPR) framework to promote engagement of NHs for a prospective pilot PD research study. A stakeholder advisory group (SAG) was formed comprising of individuals affected by PD, medical providers, and members from key local community groups. The majority of the stakeholders identified as NH (<i>n</i> = 7). Stakeholders included individuals with direct connections to PD (<i>n</i> = 9) and no direct connection to PD (<i>n</i> = 4). <h3>Results:</h3> Key objectives were identified: 1) partner with stakeholders who have established trust in the community 2) identify opportunities to educate the community and participants 3) create a comfortable environment for the participant. This study is ongoing; based on these objectives we will adapt the research process, follow NH recruitment and solicit SAG member’s feedback upon completion. <h3>Conclusions:</h3> Adapting a CBPR framework to include representative of the NH community and PD community into a SAG adds diversity to the SAG. Stakeholder input promotes engagement in underserved communities with low rates of research participation. This framework has the potential to be translated toward other minority communities to increase PD research participation. <b>Disclosure:</b> Ms. Krening has nothing to disclose. Dr. Trinacty has nothing to disclose. Mr. Hanakeawe has nothing to disclose. Dr. Gao has nothing to disclose. The institution of Dr. Ross has received research support from Pharma Two b Ltd. The institution of Dr. Ross has received research support from Parkinson’s Foundation. An immediate family member of Dr. Bruno has received personal compensation in the range of $10,000-$49,999 for serving as a Director with Hawaii State EMS.

As the inaugural issue of Journal of Parkinson’s Disease (www.journalofparkinsonsdisease.com) features an article highlighting the most cited 100 Parkinson’s disease researchers over the past 26 years and so many of them were based in or passed through the Maudsley and King’s College Hospitals in Denmark Hill and the National Hospital, Queen Square, in London while I was there, the editors suggested that I write a short piece about the transformation of “Parkinsonology” from that perspective and the contributions of some of those individuals. Sadly there is not enough space to mention all of the many other people who passed through, or collaborated, and also made significant contributions. Developments over the last 50 years or so have transformed the study of Parkinson’s disease from a relatively obscure untreatable neurological disease of unknown aetiology into a thriving modern neuroscience discipline involving specialist clinics and nurses, sophisticated clinical trials, dedicated brain banks, structural and functional imaging, genetic discoveries, animal models, patient and professional societies, and specialist journals, now including this new addition. We now have a much greater understanding of underlying mechanisms that paves the way to developing a second generation of strategies and therapies designed to modify the disease itself, and hopefully even to prevent it. The most cited 100 researchers have played an important part in this transformation.

Neuropsychologic assessment in collaborative Parkinson’s disease research: A proposal from the National Institute of Neurological Disorders and Stroke Morris K. Udall Centers of Excellence for Parkinson’s Disease Research at the University of Pennsylvania and the University of Washington

Progress: Advancing Parkinson's Research, the Parkinson's Disease Society research conference dedicated to showcasing the work of young Parkinson's disease researchers, was held in York in November 2008, attracting nearly 200 delegates. Neil Archibald, Parkinson's Disease Society Research Fellow, reports on some of the highlights of the conference, including stem cell and gene therapy research, the role of Lewy bodies in dementia and the use of deep brain stimulation in the treatment of Parkinson's disease. Copyright © 2009 Wiley Interface Ltd

Over the past two decades, our understanding of Parkinson's disease (PD) has been gleaned from the discoveries made in familial and/or sporadic forms of PD in the Caucasian population. The transferability and the clinical utility of genetic discoveries to other ethnically diverse populations are unknown. The Indian population has been under-represented in PD research. The Genetic Architecture of PD in India (GAP-India) project aims to develop one of the largest clinical/genomic bio-bank for PD in India. Specifically, GAP-India project aims to: (1) develop a pan-Indian deeply phenotyped clinical repository of Indian PD patients; (2) perform whole-genome sequencing in 500 PD samples to catalog Indian genetic variability and to develop an Indian PD map for the scientific community; (3) perform a genome-wide association study to identify novel loci for PD and (4) develop a user-friendly web-portal to disseminate results for the scientific community. Our “hub-spoke” model follows an integrative approach to develop a pan-Indian outreach to develop a comprehensive cohort for PD research in India. The alignment of standard operating procedures for recruiting patients and collecting biospecimens with international standards ensures harmonization of data/bio-specimen collection at the beginning and also ensures stringent quality control parameters for sample processing. Data sharing and protection policies follow the guidelines established by local and national authorities.We are currently in the recruitment phase targeting recruitment of 10,200 PD patients and 10,200 healthy volunteers by the end of 2020. GAP-India project after its completion will fill a critical gap that exists in PD research and will contribute a comprehensive genetic catalog of the Indian PD population to identify novel targets for PD.