GLORIA

GEOMAR Library Ocean Research Information Access

Your email was sent successfully. Check your inbox.

An error occurred while sending the email. Please try again.

Proceed reservation?

Export
  • 1
    In: Journal of Parkinson's Disease, IOS Press, Vol. 10, No. 2 ( 2020-04-03), p. 677-691
    Abstract: Background: Online tools for data collection could be of value in patient-oriented research. The Fox Insight (FI) study collects data online from individuals with self-reported Parkinson’s disease (PD). Comparing the FI cohort to other cohorts assessed through more traditional (in-person) observational research studies would inform the representativeness and utility of FI data. Objective: To compare self-reported demographic characteristics, symptoms, medical history, and PD medication use of the FI PD cohort to other recent observational research study cohorts assessed with in-person visits. Methods: The FI PD cohort (n = 12,654) was compared to 3 other cohorts, selected based on data accessibility and breadth of assessments: Parkinson’s Progression Markers Initiative (PPMI; PD n = 422), Parkinson’s Disease Biomarker Program (PDBP; n = 700), and PD participants in the LRRK2 consortium without LRRK2 mutations (n = 508). Demographics, motor and non-motor assessments, and medications were compared across cohorts. Where available, identical items on surveys and assessments were compared; otherwise, expert opinion was used to determine comparable definitions for a given variable. Results: The proportion of females was significantly higher in FI (45.56%) compared to PPMI (34.36%) and PDBP (35.71%). The FI cohort had greater educational attainment as compared to all other cohorts. Overall, prevalence of difficulties with motor experiences of daily living and non-motor symptoms in the FI cohort was similar to other cohorts, with only a few significant differences that were generally small in magnitude. Missing data were rare for the FI cohort, except on a few variables. Discussion: Patterns of responses to patient-reported assessments obtained online on the PD cohort of the FI study were similar to PD cohorts assessed in-person.
    Type of Medium: Online Resource
    ISSN: 1877-7171 , 1877-718X
    Language: Unknown
    Publisher: IOS Press
    Publication Date: 2020
    detail.hit.zdb_id: 2599550-9
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 2
    Online Resource
    Online Resource
    Cambridge University Press (CUP) ; 2020
    In:  Journal of Clinical and Translational Science Vol. 4, No. s1 ( 2020-06), p. 118-119
    In: Journal of Clinical and Translational Science, Cambridge University Press (CUP), Vol. 4, No. s1 ( 2020-06), p. 118-119
    Abstract: OBJECTIVES/GOALS: This team science pilot program aims to elevate the quality of Parkinson’s disease modeling initiatives by strengthening connections between clinical researchers and computational teams. As many data science projects in Parkinson’s research would benefit from deeper clinical expertise, many clinical engagements would be improved by upfront integration of computational requirements. These team science programs, developed from design thinking methodologies, provide structured, sustainable, and scalable means for multi-disciplinary teams to come together and co-create translational science in PD. METHODS/STUDY POPULATION: Design Thinking (DT) could help yield an effective learning experience. DT is grounded in ethnographic research strategies and prototyping, relying heavily on grantee interviews and feedback. This approach is commonly used to navigate and design amidst complexity; its applications range from product to healthcare to instructional design. The following is an overview of the process as applied to this project: Discover : Once the core team (MJFF and project designers) has refined the key question they would like to answer, the team will begin gathering both primary and secondary data. This phase may include focus groups, one-on-one interviews, expert interviews, and immersive data-gathering. The purpose of this phase is to capture complexity and lay the groundwork to understand grantees’ perspectives and lexicon around their work. The deliverables of this phase are primarily unstructured research findings, such as transcribed interviews and secondary sources. Define : When sufficient data has been gathered, the core team will move into an initial round of synthesis and sense-making (making connections and assumptions to explain emerging themes in the data). This phase may include one to two in-person engagements with the core team. The purpose of this phase is to define the guiding principles for subsequent prototypes. It will also help reveal potential opportunity areas, both latent or apparent. The deliverables of this phase are agreed upon key themes, insights, and an informed “How Might We” question that will anchor the ideation process. Develop : Armed with informed themes, the core team will begin to brainstorm potential solutions. Following a set of brainstorming techniques, they will initially aim for quantity versus quality in order to allow potentially innovative and/or risky solutions to surface. Eventually, these ideas will be distilled into three robust and unique prototypes. Like the prior phase, ideation may also require one to two in-person engagements. The deliverables here are three unique prototypes; the reason for three is the ensure that the team does not anchor themselves in just one solution, but rather remains in an exploratory mindset as they solicit feedback on these prototypes from the grantees. Deliver : In this final phase, the core team revisits the grantees and presents the three prototypes. This phase may include conducting three small-scale pilots or simply just explaining the prototypes. Either way, it is important to solicit another round of feedback to ensure the solutions are indeed addressing the needs and context of grantees. Once completed, the core team will iterate a final pilot design and identify any remaining questions and assumptions they would like the pilot to inform. RESULTS/ANTICIPATED RESULTS: The team science pilot identifies five main opportunities to tighten collaboration, communication, and expectations across clinical and computational teams. Firstly, in-person events, held regularly in a central location, can act as an incubating space for these teams to partner, ideate, and pitch for grant funding. Secondly, co-developed guidelines for research questions would ensure consistent availability of clinically-relevant, computationally-feasible research topics. Thirdly, increasing the presence of Parkinson’s cohort data resources at computational conferences could introduce more diverse data and genetics interest in Parkinson’s research. Fourthly, a standard suite of research-facing, educational content (focused on both disease background and data basics) would ensure a strong baseline and launch-pad for PD modeling projects. Lastly, a fellowship program focused on early-stage researchers could establish a unique foundation to ground both clinical and computations fellows to collaboratively work on PD research as well as iterate on the aforementioned solutions. DISCUSSION/SIGNIFICANCE OF IMPACT: This team science program has the potential to upend collaborative silos in Parkinson’s research, accelerating disease modeling projects which otherwise stagnate or over-emphasize clinical v. computational aspects. By more effectively connecting team members with diverse backgrounds across clinical and computational roles, PD disease patterns can be discovered and validated ultimately resulting in improved patient care and therapeutic development. CONFLICT OF INTEREST DESCRIPTION: Several authors are staff members at The Michael J. Fox Foundation for Parkinson’s Research, the sponsor of this Team Science grant. All author and non-author contributors are grant recipients from The Michael J. Fox Foundation.
    Type of Medium: Online Resource
    ISSN: 2059-8661
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2020
    detail.hit.zdb_id: 2898186-8
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 3
    In: Journal of Participatory Medicine, JMIR Publications Inc., Vol. 13, No. 1 ( 2021-3-29), p. e23011-
    Abstract: Sharing clinical trial data can provide value to research participants and communities by accelerating the development of new knowledge and therapies as investigators merge data sets to conduct new analyses, reproduce published findings to raise standards for original research, and learn from the work of others to generate new research questions. Nonprofit funders, including disease advocacy and patient-focused organizations, play a pivotal role in the promotion and implementation of data sharing policies. Funders are uniquely positioned to promote and support a culture of data sharing by serving as trusted liaisons between potential research participants and investigators who wish to access these participants’ networks for clinical trial recruitment. In short, nonprofit funders can drive policies and influence research culture. The purpose of this paper is to detail a set of aspirational goals and forward thinking, collaborative data sharing solutions for nonprofit funders to fold into existing funding policies. The goals of this paper convey the complexity of the opportunities and challenges facing nonprofit funders and the appropriate prioritization of data sharing within their organizations and may serve as a starting point for a data sharing toolkit for nonprofit funders of clinical trials to provide the clarity of mission and mechanisms to enforce the data sharing practices their communities already expect are happening.
    Type of Medium: Online Resource
    ISSN: 2152-7202
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2021
    detail.hit.zdb_id: 2573853-7
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 4
    In: Scientific Data, Springer Science and Business Media LLC, Vol. 7, No. 1 ( 2020-02-24)
    Abstract: Fox Insight is an online, longitudinal health study of people with and without Parkinson’s disease with targeted enrollment set to at least 125,000 individuals. Fox Insight data is a rich data set facilitating discovery, validation, and reproducibility in Parkinson’s disease research. The dataset is generated through routine longitudinal assessments (health and medical questionnaires evaluated at regular cycles), one-time questionnaires about environmental exposure and healthcare preferences, and genetic data collection. Qualified Researchers can explore, analyze, and download patient-reported outcomes (PROs) data and Parkinson’s disease- related genetic variants at https://foxden.michaeljfox.org . The full Fox Insight genetic data set, including approximately 600,000 single nucleotide polymorphisms (SNPs), can be requested separately with institutional review and are described outside of this data descriptor.
    Type of Medium: Online Resource
    ISSN: 2052-4463
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 2775191-0
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 5
    In: Movement Disorders, Wiley, Vol. 36, No. 1 ( 2021-01), p. 106-117
    Abstract: Previous studies reported various symptoms of Parkinson's disease (PD) associated with sex. Some were conflicting or confirmed in only one study. Objectives We examined sex associations to PD phenotypes cross‐sectionally and longitudinally in large‐scale data. Methods We tested 40 clinical phenotypes, using longitudinal, clinic‐based patient cohorts, consisting of 5946 patients, with a median follow‐up of 3.1 years. For continuous outcomes, we used linear regressions at baseline to test sex‐associated differences in presentation, and linear mixed‐effects models to test sex‐associated differences in progression. For binomial outcomes, we used logistic regression models at baseline and Cox regression models for survival analyses. We adjusted for age, disease duration, and medication use. In the secondary analyses, data from 17 719 PD patients and 7588 non‐PD participants from an online‐only, self‐assessment PD cohort were cross‐sectionally evaluated to determine whether the sex‐associated differences identified in the primary analyses were consistent and unique to PD. Results Female PD patients had a higher risk of developing dyskinesia early during the follow‐up period, with a slower progression in activities of daily living difficulties, and a lower risk of developing cognitive impairments compared with male patients. The findings in the longitudinal, clinic‐based cohorts were mostly consistent with the results of the online‐only cohort. Conclusions We observed sex‐associated contributions to PD heterogeneity. These results highlight the necessity of future research to determine the underlying mechanisms and importance of personalized clinical management. © 2020 International Parkinson and Movement Disorder Society
    Type of Medium: Online Resource
    ISSN: 0885-3185 , 1531-8257
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 2041249-6
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 6
    In: The Lancet Digital Health, Elsevier BV, Vol. 3, No. 9 ( 2021-09), p. e555-e564
    Type of Medium: Online Resource
    ISSN: 2589-7500
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2021
    detail.hit.zdb_id: 2972368-1
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 7
    In: Journal of Participatory Medicine, JMIR Publications Inc., Vol. 13, No. 2 ( 2021-6-30), p. e31371-
    Type of Medium: Online Resource
    ISSN: 2152-7202
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2021
    detail.hit.zdb_id: 2573853-7
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
Close ⊗
This website uses cookies and the analysis tool Matomo. More information can be found here...