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Background Parkinson’s disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany. Methods This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis. Results Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals’ experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as ‘life 2.0’. They identified the lack of structured and adequate provision of information, system orientation and social awareness. Conclusions In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety. Trial Registration German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).

Cognitive impairment is an important constraint for PwPD with Parkinson’s disease (PwPD). Digital assessments potentially provide more accessible measurements and obtain a richer set of data than traditional paper–pencil-based instruments. Open-source generation can support the availability of comparable assessments in different cohorts. A digital, tablet-based cognitive assessment (DiCo) comprising 13 distinct tests was implemented as an open-source tool, expanding on available frameworks. Commonly used tests were selected to cover response inhibition, cognitive flexibility, attention, and working memory. After extensive usability testing, the DiCo was applied in participants without overt cognitive impairment. 97 participants (43% women) completed the entire DiCo. Clustering of DiCo feature correlations and conditional dependencies indicated a predominantly mutual organization of cognitive performance in PwPD. Exploratory factor analysis identified five interrelated latent factors. Most factors were derived from individual tests and correlated moderately with traditional neuropsychological tests and questionnaires. Machine learning identified a test of working memory (N-back) as the most predictive feature for the Montreal Cognitive Assessment. Latent profile analysis revealed four cognitive subgroups, mainly reflecting severity. The open-source digital cognitive assessment established in this study showed good usability by PwPD. The observed overlap between individual DiCo features and MoCA and FAB scores may inform future reduced task sets for research or selected clinical settings.

Parkinson disease (PD) is the fastest-growing neurodegenerative disorder in the world, with prevalence expected to exceed 12 million by 2040, which poses significant health care and societal challenges. Artificial intelligence (AI) systems and wearable sensors hold potential for PD diagnosis, personalized symptom monitoring, and progression prediction. Nonetheless, ethical AI adoption requires several core principles, including user trust, transparency, fairness, and human oversight. This study aims to explore and synthesize the perspectives of diverse stakeholders, such as individuals living with PD, health care professionals, AI experts, and bioethicists. The aim was to guide the development of AI-driven digital health solutions, emphasizing transparency, data security, fairness, and bias mitigation while ensuring robust human oversight. These efforts are part of the broader Artificial Intelligence-Based Parkinson's Disease Risk Assessment and Prognosis (AI-PROGNOSIS) European project, dedicated to advancing ethical and effective AI applications in PD diagnosis and management. An exploratory qualitative approach, based on 2 datasets constructed from cocreation workshops, engaged key stakeholders with diverse expertise to gather insights, ensuring a broad range of perspectives and enriching the thematic analysis. A total of 24 participants participated in the cocreation workshops, including 11 (46%) people with PD, 6 (25%) health care professionals, 3 (13%) AI technical experts, 1 (4%) bioethics expert, and 3 (13%) facilitators. Using a semistructured guide, key aspects of the discussion centered on trust, fairness, explainability, autonomy, and the psychological impact of AI in PD care. Thematic analysis of the cocreation workshop transcripts identified 5 key main themes, each explored through various corresponding subthemes. AI trust and security (theme 1) was highlighted, focusing on data safety and the accuracy and reliability of the AI systems. AI transparency and education (theme 2) emphasized the need for educational initiatives and the importance of transparency and explainability of AI technologies. AI bias (theme 3) was identified as a critical theme, addressing issues of bias and fairness and ensuring equitable access to AI-driven health care solutions. Human oversight (theme 4) stressed the significance of AI-human collaboration and the essential role of human review in AI processes. Finally, AI's psychological impact (theme 5) examined the emotional impact of AI on patients and how AI is perceived in the context of PD care. Our findings underline the importance of implementing robust security measures, developing transparent and explainable AI models, reinforcing bias mitigation and reduction strategies and equitable access to treatment, integrating human oversight, and considering the psychological impact of AI-assisted health care. These insights provide actionable guidance for developing trustworthy and effective AI-driven digital PD diagnosis and management solutions.

Background: Parkinson Disease (PD) is a progressive neurodegenerative disorder. Current therapeutic trials investigate treatments that can potentially modify the disease course. Testing their efficiency requires outcome assessments that are relevant to patients’ daily lives, which include gait and balance. Home-based examinations may enhance patient compliance and, in addition, produce more reliable results by assessing patients more regularly in their familiar surroundings. Objective: The objective of this pilot study was to assess the feasibility of a home-based outcome assessment designed to video record the Timed up and Go (vTUG) test via a study-specific smartphone app for patients with PD. Methods: 28 patients were recruited and asked to perform at home each week a set of three consecutive vTUG tests, over a period of 12 weeks using an app. The videos were subjected to a manual review to ascertain the durations of the individual vTUG phases, as well as to identify any errors or deviations in the setup that might have influenced the result. To evaluate the usability and user-friendliness of the vTUG and app, the System Usability Scale (SUS) and User Experience Questionnaire (UEQ) were administered to patients at the study end. Results: 19 patients completed the 12-week study, 17 of which recorded 10 videos or more. A total of 706 vTUGs with complete timings were recorded. Random Forest Regression yielded “time to walk up” as the most important segment of the vTUG for predicting the total time. Variance of vTUG total time was significantly higher between weeks than it was between the three consecutive vTUGs at one time point [F(254,23) = 6.50, p < 0.001]. The correlation between vTUG total time and UPDRS III total score was weak (r = 0.24). The correlation between vTUG and a derived gait subscore (UPDRS III items 9–13) was moderate (r = 0.59). A linear mixed-effects model revealed a significant effect of patient-reported motion status on vTUG total time. Including additional variables such as UPDRS III gait subscore, footwear and chairs used further improved the model fit. Conclusions: Assessment of gait and balance by home-based vTUG is feasible. Factors influencing the read-out were identified and could be better controlled for future use and longitudinal trials.

Integrated care is regarded as a key for care delivery to persons with chronic long-term conditions such as Parkinson’s disease. For persons with Parkinson’s disease, obtaining self-management support is a top priority in the context of integrated care. Self-management is regarded as a crucial competence in chronic diseases since the affected persons and their caregivers inevitably take up the main responsibility when it comes to day-to-day management. Formal self-management education programs with the focus on behavioral skills relevant to the induction and maintenance of behavioral change have been implemented as a standard in many chronic long-term conditions. However, besides the example of the Swedish National Parkinson School, the offers for persons with Parkinson’s disease remain fragmented and limited in availability. Today, no such program is implemented as a nationwide standard in Germany. This paper provides (1) a systematic review on structured self-management education programs specifically designed or adopted for persons with Parkinson’s disease, (2) presents the Swedish National Parkinson School as an example for a successfully implemented nationwide program and (3) presents a concept for the design, evaluation and long-term implementation of a future-orientated self-management education program for persons with Parkinson’s disease in Germany.

As integrated care is recognized as crucial to meet the challenges of chronic conditions such as Parkinson’s disease (PD), integrated care networks have emerged internationally and throughout Germany. One of these networks is the Parkinson Network Eastern Saxony (PANOS). PANOS aims to deliver timely and equal care to PD patients with a collaborative intersectoral structured care pathway. Additional components encompass personalized case management, an electronic health record, and communicative and educative measures. To reach an intersectoral consensus of the future collaboration in PANOS, a structured consensus process was conducted in three sequential workshops. Community-based physicians, PD specialists, therapists, scientists and representatives of regulatory authorities and statutory health insurances were asked to rate core pathway-elements and supporting technological, personal and communicative measures. For the majority of core elements/planned measures, a consensus was reached, defined as an agreement by >75% of participants. Additionally, six representatives from all partners involved in the network-design independently assessed PANOS based on the Development Model for Integrated Care (DMIC), a validated model addressing the comprehensiveness and maturity of integrated care concepts. The results show that PANOS is currently in an early maturation state but has the potential to comprehensively represent the DMIC if all planned activities are implemented successfully. Despite the favorable high level of consensus regarding the PANOS concept and despite its potential to become a balanced integrated care concept according to the DMIC, its full implementation remains a considerable challenge.

Background Neonatal lung injury, a leading cause of morbidity in prematurely born infants, has been associated with arrested alveolar development and is often accompanied by goblet cell hyperplasia. Genes that regulate alveolarization and inflammation are likely to contribute to susceptibility to neonatal lung injury. We previously cloned Lgl1 , a developmentally regulated secreted glycoprotein in the lung. In rat, O 2 toxicity caused reduced levels of Lgl1 , which normalized during recovery. We report here on the generation of an Lgl1 knockout mouse in order to determine whether deficiency of Lgl1 is associated with arrested alveolarization and contributes to neonatal lung injury. Methods An Lgl1 knockout mouse was generated by introduction of a neomycin cassette in exon 2 of the Lgl1 gene. To evaluate the pulmonary phenotype of Lgl1 +/- mice, we assessed lung morphology, Lgl1 RNA and protein, elastin fibers and lung function. We also analyzed tracheal goblet cells, and expression of mucin, interleukin (IL)-4 and IL-13 as markers of inflammation. Results Absence of Lgl1 was lethal prior to lung formation. Postnatal Lgl1 +/- lungs displayed delayed histological maturation, goblet cell hyperplasia, fragmented elastin fibers, and elevated expression of T H 2 cytokines (IL-4 and IL-13). At one month of age, reduced expression of Lgl1 was associated with elevated tropoelastin expression and altered pulmonary mechanics. Conclusion Our findings confirm that Lgl1 is essential for viability and is required for developmental processes that precede lung formation. Lgl1 +/- mice display a complex phenotype characterized by delayed histological maturation, features of inflammation in the post-natal period and altered lung mechanics at maturity. Lgl1 haploinsufficiency may contribute to lung disease in prematurity and to increased risk for late-onset respiratory disease.

Background Neonatal lung injury, a leading cause of morbidity in prematurely born infants, has been associated with arrested alveolar development and is often accompanied by goblet cell hyperplasia. Genes that regulate alveolarization and inflammation are likely to contribute to susceptibility to neonatal lung injury. We previously cloned Lgl1, a developmentally regulated secreted glycoprotein in the lung. In rat, O.sub.2 toxicity caused reduced levels of Lgl1, which normalized during recovery. We report here on the generation of an Lgl1 knockout mouse in order to determine whether deficiency of Lgl1 is associated with arrested alveolarization and contributes to neonatal lung injury. Methods An Lgl1 knockout mouse was generated by introduction of a neomycin cassette in exon 2 of the Lgl1 gene. To evaluate the pulmonary phenotype of Lgl1.sup.+/- .sup.mice, we assessed lung morphology, Lgl1 RNA and protein, elastin fibers and lung function. We also analyzed tracheal goblet cells, and expression of mucin, interleukin (IL)-4 and IL-13 as markers of inflammation. Results Absence of Lgl1 was lethal prior to lung formation. Postnatal Lgl1.sup.+/- .sup.lungs displayed delayed histological maturation, goblet cell hyperplasia, fragmented elastin fibers, and elevated expression of T.sub.H 2 cytokines (IL-4 and IL-13). At one month of age, reduced expression of Lgl1 was associated with elevated tropoelastin expression and altered pulmonary mechanics. Conclusion Our findings confirm that Lgl1 is essential for viability and is required for developmental processes that precede lung formation. Lgl1.sup.+/- .sup.mice display a complex phenotype characterized by delayed histological maturation, features of inflammation in the post-natal period and altered lung mechanics at maturity. Lgl1 haploinsufficiency may contribute to lung disease in prematurity and to increased risk for late-onset respiratory disease.

A deep, space-based, all-sky near-infrared survey carried out with the Nancy Grace Roman Space Telescope would constitute a foundational astronomical infrastructure for decades to come. In this white paper, we present a concrete and feasible path to imaging the entire sky at \\(0.1''\\) resolution, beginning with high-impact fields in Cycle 1 and scaling to ultra-wide coverage within the nominal mission. This first-epoch survey will reach \\(H25.5\\) AB mag (5\\(\\)) and maximize synergies with contemporaneous observatories, while preserving substantial time for other ambitious Roman programs. We outline representative scheduling scenarios and an example Cycle 1 program that triples early Roman-LSST overlap and delivers high-value community data products such as LSST forced photometry, joint Gaia-Roman astrometry, and catalogs of Galactic substructure, stong lenses, and other rare systems. The Cycle 1 program will lay the foundation for an eventual all-sky survey, while also delivering high-impact early science. We invite broad community participation in shaping and carrying out both the initial program and the long-term vision of an all-sky Roman survey.