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Development and Assessment of a Patient-Reported Outcome Instrument for Gender-Affirming Care.

IMPORTANCE: There is an urgent need for a validated gender-affirming care-specific patient-reported outcome measure (PROM). OBJECTIVE: To f … States, the Netherlands, and Spain; participants were also recruited through community groups (eg, crowdsourcing platform, social media). The study was conducted between February 2022 and March 2024. Participants had to be capable of completing the instrument in English, Danish, Dutch, or French-Canadian. Eligible participants accessed an online REDCap survey …

Stimulant Use Associated With Psychosocial Factors, HIV Risk, and Concurrent Hazardous Alcohol Use Among US Adults: Exploratory Cross-Sectional Questionnaire Study.

BACKGROUND: Stimulant use is a major public health problem that contributes to morbidity and mortality among men who have sex with men (MSM) in the United States. To reduce the harms associated with stimulant use, there is a need to identify the factors associated with stimulant use to inform interventions. Additionally, there is a need to use large crowdsourcing platforms like Amazon Mechanical Turk (MTurk) to engage more individuals who use substances across the United States. OBJECTIVE: We identified the correlates of stimulant use among people who use alcohol or stimulants in the United S…

ABHD6 Inhibition Rescues a Sex-Dependent Deficit in Motor Coordination in The HdhQ200/200 Mouse Model of Huntington's Disease.

BACKGROUND: Preparing and submitting a voluntary adverse event (AE) report to the US Food and Drug Administration (FDA) for a medical device … ment within a Motivation-Incentive-Activation-Behavior framework, a conceptual model for successful crowdsourcing. Reports submitted by patients were considerably more complete than those submitted by physicians in routine spontaneous reports. Further research is needed to understand how biases operate differently from those of traditional pharmacovigilance.

Estimating the COVID-19 Spread Through Real-time Population Mobility Patterns: Surveillance in Low- and Middle-Income Countries.

BACKGROUND: On January 21, 2020, the World Health Organization reported the first case of severe acute respiratory syndrome coronavirus 2, which rapidly evolved to the COVID-19 pandemic. Since then, the virus has also rapidly spread among Latin American, Caribbean, and African countries. OBJECTIVE: The first aim of this study is to identify new emerging COVID-19 clusters over time and space (from January 21 to mid-May 2020) in Latin American, Caribbean, and African regions, using a prospective space-time scan measurement approach. The second aim is to assess the impact of real-time population

Joy in Medicine Initiative: Bridging Physicians' Engagement Gap.

A 2023 workforce engagement survey of employees at the Houston Methodist Physician Organization (HMPO) identified a widening engagement gap … tutional electronic health record support. A second method to gather feedback involved the use of a crowdsourcing approach that yielded 66 unique improvement ideas. A thematic analysis of the feedback gathered from both approaches provided a holistic picture of the factors driving physician disengagement, including administrative burden, in-network referral dif …

Saúde na Copa: The World's First Application of Participatory Surveillance for a Mass Gathering at FIFA World Cup 2014, Brazil.

BACKGROUND: The 2005 International Health Regulations (IHRs) established parameters for event assessments and notifications that may constit … veillance mechanisms of detection, monitoring, and response. Participatory surveillance is based on crowdsourcing methods that collect information from society and then return the collective knowledge gained from that information back to society. The spread of digital social networks and wiki-style knowledge platforms has created a very favorable environment fo …

Minimal Clinically Important Differences With the Outcomes of the App-Based Japanese Allergic Conjunctival Diseases Quality of Life Questionnaire: Cross-Sectional Observational Study.

BACKGROUND: Assessing changes in quality of life in patients with hay fever-related allergic conjunctivitis requires validated and clinically meaningful metrics. A minimal clinically important difference (MCID) that can be applied to assess Domain II of the Japanese Allergic Conjunctival Disease Quality of Life Questionnaire (JACQLQ) in a smartphone app setting has yet to be determined. OBJECTIVE: This cross-sectional observational study aimed to determine MCIDs for the app-based JACQLQ in assessing hay fever-related allergic conjunctivitis. METHODS: This study used data from a crowdsourced,

Implementing Digital Respiratory Technologies for People With Respiratory Conditions: Scoping Review.

BACKGROUND: Digital health offers opportunities for safe, equitable, and accessible care, and its integration into respiratory care is a strategic priority for the European Respiratory Society. However, sustainable implementation remains complex, and guidance for health care systems is limited. OBJECTIVE: This study aimed to undertake a scoping review of the published initiatives that have implemented digital respiratory technologies into real-world routine clinical practice over the past decade, identify the technologies used, implementation strategies used, the challenges and supports they

Sustaining the 4 youth by youth HIV prevention intervention in Nigeria: a cluster randomized controlled trial protocol.

BACKGROUND: Sustaining evidence-based HIV prevention interventions remains a challenge, particularly among at-risk youth in Africa. The 4 Youth by Youth (4YBY) sustainment study is a hybrid type 2 cluster randomized controlled trial that evaluates the sustainability and cost-effectiveness of a crowdsourced approach to sustaining a package of evidence-based HIV prevention services. The study will be conducted across 40 community sites, supported by 18 community-based organizations (CBOs) providing HIV prevention services in Nigeria. Given their longstanding engagement with young people, CBOs se

Impact of the "when the fun stops, stop" gambling message on online gambling behaviour: a randomised, online experimental study.

BACKGROUND: Safer gambling messages are a common freedom-preserving method of protecting individuals from gambling-related harm. Yet, there is little independent and rigorous evidence assessing the effectiveness of safer gambling messages. In our study, we aimed to test the effect of the historically most commonly-used UK safer gambling message on concurrent gambling behaviour of people who gamble in the UK. METHODS: In this study, three preregistered, incentivised, and randomised online experiments, testing the UK's "when the fun stops, stop" message, were carried out via the crowdsourcing p…

Development and validation of a novel survey measuring lumbar activity levels: the Hospital for Special Surgery Core Health Evaluation-Lumbar Activity Rating Scale (HSS CHEV-LARS).

BACKGROUND CONTENT: Preoperative activity level provides a key baseline metric to evaluate postoperative recovery. Preoperative physical the … tivity Rating Scale (HSS CHEV-LARS). In phase 4 (validation) 205 respondents from a secure research crowdsourcing platform (CloudResearchTM) completed the HSS CHEV-LARS, ODI, and PROMIS PF CAT. The same respondents were asked to complete the HSS CHEV-LARS again 1 week later to assess test-retest validity via intraclass correlation coefficient (ICC). Construct v …

За пределами здоровых границ: контрольные интервалы для населения и индивидуального медицинского анализа речи.

Интервалы справочной информации (РИ) являются хорошо зарекомендовавшим себя клиническим инструментом для определения здоровых границ лабораторных измерений. В последнее время они применяются к акустическим особенностям, извлекаемым из речи, в целях обеспечения транспарентности и агностической оценки симптомов. Мы оцениваем потенциал и ограничения RI в трех наборах данных: чистые, лабораторные записи людей с множественным склерозом (PwMS) и два шумных набора данных, ориентированных на респираторные симптомы и стресс, связанный с работой, которые собираются в условиях повседневной жизни. Что кас

HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma.

PurposeThe study of rare diseases, such as multiple myeloma (MM), often experiences unique research hurdles that can delay or prevent lifesaving discoveries. HealthTree Cure Hub is a first-in-class software program designed to overcome these potential research hurdles.MethodsWe assessed whether HealthTree Cure Hub improved four commonly experienced research hurdles such as (1) small numbers of patient accrual to clinical trials and research studies, (2) shallow and isolated data sets, (3) high costs to answer research questions, and (4) lack of long-term follow-up patient data.ResultsAs of Jun

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… Patients were also able to view crowdsourced side-effect solutions, become educated using a comprehensive online myeloma curriculum in HealthTree University, participate in community forums, find a Myeloma HealthTree Coach, contribute to research, or interact with live reports. … Clinical characteristics of 18 patients with psoriasis and multiple myeloma identified through digital health crowdsourcing. Dermatol Ther (Heidelb) 2020;10:815–827. doi: 10.1007/s13555-020-00416-5. 19. Furr NR, Ahlstrom PB. …

Online education for rare genetic diseases: a systematic review.

IntroductionRare genetic diseases are, collectively, not in fact rare. However, educational opportunities focused on rare genetic disease can be limited. The Internet has increased the availability of education related to rare genetic disease and is accessible to a diverse range of people who seek out such information, including healthcare professionals, researchers, students, patients, and the public.PurposeTo assess the potential educational outreach of the Internet, this systematic literature review will appraise the landscape of what education for rare genetic disease is available online,

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… Table 4 Categories of grade B results (excluded from review) Category | Results Bioinformatics tool/resource | 119 Clinical intervention | 14 Crowdsourcing | 3 Database/registry/network | 98 Delphi consensus/guidelines | 26 Knowledge assessment | 10 Matchmaking | 9 Non-academic literature | 10 Non-English … Phenotate: crowdsourcing phenotype annotations as exercises in undergraduate classes. Genet Med. 2020;22(8):1391–400. 38. Lewis C, Sanderson SC, Hammond J, et al. Development and mixed-methods evaluation of an online animation for young people about genome sequencing. …

Mixed-Methods to Define Meaningful Change using Exit Interviewand Clinical Trial Data in Patients with Tenosynovial Giant Cell Tumor (TGCT).

BACKGROUND: Tenosynovial giant cell tumor (TGCT) is a locally aggressive neoplasm associated with limited range of motion (ROM), stiffness, joint damage, pain, and reduced physical functioning (PF). The MOTION Phase 3 trial (NCT05059262) was a randomized, placebo-controlled, double-blind study of vimseltinib among patients with TGCT. The objective of the current study was to define meaningful changes in clinical outcome assessments (COAs) measuring active ROM, PF, and stiffness using qualitative and quantitative data from patients in the MOTION trial. METHODS: Embedded exit interviews with pa

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… Mastboom MJ Planje R van de Sande MA The patient perspective on the impact of tenosynovial giant cell tumors on daily living: Crowdsourcing study on physical function and quality of life Interactive Journal of Medical Research 2018 7 1 e4 10.2196/ijmr.9325 29475829 PMC5845102 Mastboom, M. … The patient perspective on the impact of tenosynovial giant cell tumors on daily living: Crowdsourcing study on physical function and quality of life. Interactive Journal of Medical Research, 7 (1), Article e4. 10.2196/ijmr.9325 29475829 10.2196/ijmr.9325 PMC5845102 31. …

Multi-domain interventions for the prevention of dementia and cognitive decline.

BACKGROUND: Dementia is a worldwide concern. Its global prevalence is increasing. Currently, no effective medical treatment exists to cure o … of at least 12 months. DATA COLLECTION AND ANALYSIS: We initially screened search results using a 'crowdsourcing' method in which members of Cochrane's citizen science platform identify RCTs. We screened the identified citations against inclusion criteria by two review authors working independently. At least two review authors also independently extracted data …

A retrospective review of the management of patients following a malignancy diagnosis on biologic therapies for the treatment of dermatological disorders.

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… Clinical characteristics of 18 patients with psoriasis and multiple myeloma identified through digital health crowdsourcing Dermatol Ther 10 4 2020 815 827 10.1007/s13555-020-00416-5 PMC7367969 32638223 12 Lasagni C. Bigi L. Conti A. Pellacani G. …

Case Report: Trametinib in the treatment of patients with metastatic lung adenocarcinoma harboring NF1 mutation: a case series and literature review.

BackgroundThe neurofibromin 1 (NF1) protein regulates the downstream RAS/RAF/MEK/ERK pathway and functions as a tumor suppressor. Somatic pathogenic mutations in NF1 are found in approximately 4.7%-10% of NSCLC, with a higher frequency in lung adenocarcinomas, reaching up to 15% in certain cohorts. Trametinib, a MEK inhibitor, has demonstrated activity in tumors with NF1 alteration in preclinical models, and clinical activity in low-grade glioma and plexiform neurofibromas in neurofibromatosis type 1. Trametinib had only limited clinical efficacy in other tumor types with NF1 mutations in the

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… CIViC is a community knowledgebase for expert crowdsourcing the clinical interpretation of variants in cancer . Nat Genet . ( 2017 ) 49 : 170–4 . doi: 10.1038/ng.3774 , PMID: 28138153 PMC5367263 11 Chakravarty D Gao J Phillips S Kundra R Zhang H Wang J . …

Disease-modifying antirheumatic drugs (DMARDs) for rheumatoid arthritis after failure of biologic or targeted synthetic therapy: a systematic review and network meta-analysis.

RATIONALE: After inadequate response to first-line biologic or targeted synthetic (b/ts) disease-modifying antirheumatic drug (DMARD) therap … NTHESIS METHODS: We first screened the records using an approach that combined machine learning and crowdsourcing to identify probable RCTs. We then reviewed the records identified as RCTs for eligibility and simultaneously classified them to the appropriate Population, Intervention, Comparator, and Outcome (PICO) question(s). Two review authors then extracted …