2025
Diagnostic delay and misdiagnosis of symptoms reported by patients with multiple sclerosis participating in a research registry
Solomon A, Weinstein S, Shinohara R, Aoun S, Schmidt H, Solari A. Diagnostic delay and misdiagnosis of symptoms reported by patients with multiple sclerosis participating in a research registry. Multiple Sclerosis Journal - Experimental Translational And Clinical 2025, 11: 20552173251333390. PMID: 40292040, PMCID: PMC12033781, DOI: 10.1177/20552173251333390.Peer-Reviewed Original ResearchInitial symptom of MSDiagnostic delayMisdiagnosis of symptomsMultiple sclerosisSymptoms of MSAssociated with longer diagnostic delayLong diagnostic delayDiagnostic journey of patientsMS diagnostic criteriaJourney of patientsPatient RegistryDiagnostic criteriaPreventable causeMisdiagnosisDiagnostic journeyResearch RegistrySymptomsCohort dataPatientsCriteria revisionMedianRegistrySclerosisSurvey studyParticipants
2024
Blueprint for destigmatizing depression and increasing openness to treatment among adolescents using brief social contact-based videos: a qualitative study
DiGiovanni M, Jankowski S, Dixon L, Martin A, Amsalem D. Blueprint for destigmatizing depression and increasing openness to treatment among adolescents using brief social contact-based videos: a qualitative study. Frontiers In Child And Adolescent Psychiatry 2024, 3: 1386284. PMID: 39816593, PMCID: PMC11731602, DOI: 10.3389/frcha.2024.1386284.Peer-Reviewed Original ResearchHelp-seekingDestigmatize depressionVideo interventionSocial contact-based video interventionSocial contact-based videosIncrease help-seeking behaviorOpenness to treatmentClinical research registrySchool-based interventionsHelp-seeking behaviorSemi-structured interviewsDepression stigmaMental healthcarePublic health concernSystemic barriersPeer stigmaThematic analysisResearch RegistryQualitative studyUnmet needsStigmaHealth concernAdolescents' perspectivesInterventionDepression
2023
Understanding Heterogeneity in Patients’ Conceptualisation of Treatment for Rheumatoid Arthritis: A Cluster Analysis
Hsiao B, Downs J, Lanyon M, Blalock S, Curtis J, Harrold L, Nowell W, Wiedmeyer C, Venkatachalam S, Patterson M, Gavigan K, Stradford L, Ali D, Fraenkel L. Understanding Heterogeneity in Patients’ Conceptualisation of Treatment for Rheumatoid Arthritis: A Cluster Analysis. BMJ Open 2023, 13: e070848. PMID: 37666546, PMCID: PMC10481841, DOI: 10.1136/bmjopen-2022-070848.Peer-Reviewed Original ResearchConceptsDisease-modifying antirheumatic drugsMedication adherencePatients' conceptualisationRA treatmentRisk/benefit ratioEffective patient-physician communicationFull medication adherenceRheumatoid arthritis managementPatient-physician communicationLower decisional conflictHigh-quality careOnly significant demographic predictorPatient hesitancyAntirheumatic drugsDisease activityPhysician recommendationArthritis managementRheumatoid arthritisSignificant demographic predictorsEligible participantsPatient interviewsResearch RegistryTreatment variesDecisional conflictQuality care
2021
Genotype‒Structurotype‒Phenotype Correlations in Patients with Pachyonychia Congenita
Wu TT, Eldirany SA, Bunick CG, Teng JMC. Genotype‒Structurotype‒Phenotype Correlations in Patients with Pachyonychia Congenita. Journal Of Investigative Dermatology 2021, 141: 2876-2884.e4. PMID: 34116063, PMCID: PMC8922998, DOI: 10.1016/j.jid.2021.03.035.Peer-Reviewed Original ResearchConceptsPachyonychia congenitaInternational PC Research RegistryPainful palmoplantar keratodermaPhenotype correlationNatal teethNail involvementClinical manifestationsKeratin subtypesFollicular hyperkeratosisResearch RegistryOral leukokeratosisPC pathogenesisNail dystrophyPathologic alterationsCutaneous cystsDisease pathogenesisHotspot missense mutationsPatientsClinical phenotypeGreater impairmentGenetic testingHigh-frequency mutationsTherapeutic developmentPalmoplantar keratodermaGenetic disorders
2018
Learning, Life, and Lactation: Knowledge of Breastfeeding's Impact on Breast Cancer Risk Reduction and Its Influence on Breastfeeding Practices
Ganju A, Suresh A, Stephens J, Palettas M, Burke D, Miles L, Lehman K, Rudesill R, Lustberg M, Bose-Brill S, Ramaswamy B. Learning, Life, and Lactation: Knowledge of Breastfeeding's Impact on Breast Cancer Risk Reduction and Its Influence on Breastfeeding Practices. Breastfeeding Medicine 2018, 13: 651-656. PMID: 30354228, DOI: 10.1089/bfm.2018.0170.Peer-Reviewed Original ResearchConceptsBreast cancer risk reductionCancer risk reductionBreastfeeding practicesBreast cancerHealthcare providersOhio State University Comprehensive Cancer CenterRisk reductionDuration of breastfeedingClinical research registryPrimary care practicesComprehensive cancer centerAfrican American womenSustain breastfeedingCancer CenterKnowledge of associationsCaucasian womenBreastfeeding benefitsResearch RegistryRecent childbirthLive birthsProtective effectAims/Improved counselingBreastfeedingCare practices
2015
Su1482 Epicc (Electronic Pancreatic Cyst Clinic) for Epic: A Live Electronic Medical Record Based Pancreatic Cystic Neoplasm Clinical and Research Registry
Solad Y, Kashyap N, Hsiao A, Farrell J. Su1482 Epicc (Electronic Pancreatic Cyst Clinic) for Epic: A Live Electronic Medical Record Based Pancreatic Cystic Neoplasm Clinical and Research Registry. Gastroenterology 2015, 148: s-525. DOI: 10.1016/s0016-5085(15)31753-4.Peer-Reviewed Original Research
2014
The molecular genetic analysis of the expanding pachyonychia congenita case collection
Wilson N, O'Toole E, Milstone L, Hansen C, Shepherd A, Al‐Asadi E, Schwartz M, McLean W, Sprecher E, Smith F. The molecular genetic analysis of the expanding pachyonychia congenita case collection. British Journal Of Dermatology 2014, 171: 343-355. PMID: 24611874, PMCID: PMC4282083, DOI: 10.1111/bjd.12958.Peer-Reviewed Original ResearchConceptsPachyonychia congenitaInternational Pachyonychia Congenita Research RegistryClinical diagnosisPeripheral blood leucocytesFollicular keratosisResearch RegistryBlood leucocytesOral leucokeratosisNail dystrophyKeratin mutationsUnreported mutationsPalmoplantar keratodermaChain reaction productsCase collectionDiagnosisKRT6CKRT6APolymerase chain reaction productsMolecular genetic analysisKRT6BKRT16KRT17Keratin genesMutationsTotal number
2013
Pediatric nephrogenic systemic fibrosis is rarely reported: a RADAR report
Nardone B, Saddleton E, Laumann AE, Edwards BJ, Raisch DW, McKoy JM, Belknap SM, Bull C, Haryani A, Cowper SE, Abu-Alfa AK, Miller FH, Godinez-Puig V, Dharnidharka VR, West DP. Pediatric nephrogenic systemic fibrosis is rarely reported: a RADAR report. Pediatric Radiology 2013, 44: 173-180. PMID: 24057195, PMCID: PMC3946726, DOI: 10.1007/s00247-013-2795-x.Peer-Reviewed Original ResearchConceptsNephrogenic systemic fibrosisSystemic fibrosisGadolinium-based contrast agentsDrug Administration Adverse Event Reporting SystemAdverse Event Reporting SystemEvent Reporting SystemRenal functionPediatric casesResearch RegistryContrast agentsFibrosisDuplicate reportingU.S. FoodSystematic searchReported numberRegistryChildrenReporting systemFAERSExposureReportAgentsMethodsWeCases
2005
Clinical and Pathological Features of Pachyonychia Congenita
Leachman SA, Kaspar RL, Fleckman P, Florell SR, Smith FJ, McLean WH, Lunny DP, Milstone LM, van Steensel MA, Munro CS, O'Toole EA, Celebi JT, Kansky A, Lane E. Clinical and Pathological Features of Pachyonychia Congenita. Journal Of Investigative Dermatology Symposium Proceedings 2005, 10: 3-17. PMID: 16250204, DOI: 10.1111/j.1087-0024.2005.10202.x.Peer-Reviewed Original ResearchConceptsPachyonychia congenitaPainful plantar keratodermaUnreported clinical featuresVariable clinical findingsPossible pathogenic mechanismsEarly primary tooth lossPrimary tooth lossNipple lesionsPC patientsAmbulatory aidsNatal teethClinical featuresClinical findingsFollicular keratosisLaryngeal involvementProspective evaluationPathological featuresTooth lossPalmar keratodermaOral mucosaResearch RegistryOral leukokeratosisPlantar keratodermaPathogenic mechanismsCutaneous cysts
1999
Comparison of treatment with fluorinated glucocorticoids to the natural history of autoantibody‐associated congenital heart block: Retrospective review of the research registry for neonatal lupus
Saleeb S, Copel J, Friedman D, Buyon J. Comparison of treatment with fluorinated glucocorticoids to the natural history of autoantibody‐associated congenital heart block: Retrospective review of the research registry for neonatal lupus. Arthritis & Rheumatism 1999, 42: 2335-2345. PMID: 10555029, DOI: 10.1002/1529-0131(199911)42:11<2335::aid-anr12>3.0.co;2-3.Peer-Reviewed Original ResearchConceptsCongenital heart blockSecond-degree blockThird-degree blockGroup B fetusesGroup BGroup AHeart blockAge 4 yearsNeonatal lupusPericardial effusionPleural effusionResearch RegistryFluorinated steroidsAutoantibody-associated congenital heart blockAnti-SSB/La antibodiesAnti-SSA/RoFluorinated glucocorticoidsNatural historyInitial echocardiographic evaluationDuration of pregnancyIntrauterine growth restrictionFirst-degree blockNumber of deathsComparison of treatmentsSteroid therapy
1995
Older Community‐Dwelling Adults' Attitudes Toward and Practices of Health Promotion and Advance Planning Activities
Fried T, Rosenberg R, Lipsitz L. Older Community‐Dwelling Adults' Attitudes Toward and Practices of Health Promotion and Advance Planning Activities. Journal Of The American Geriatrics Society 1995, 43: 645-649. PMID: 7775723, DOI: 10.1111/j.1532-5415.1995.tb07199.x.Peer-Reviewed Original ResearchMeSH KeywordsAdvance DirectivesAgedAged, 80 and overAutopsyCholesterolEducational StatusExerciseFemaleHealth Knowledge, Attitudes, PracticeHealth PromotionHumansInfluenza VaccinesMaleMammographyPatient ParticipationPhysician-Patient RelationsPreventive MedicineProstatic NeoplasmsRectal DiseasesSigmoidoscopyTissue and Organ ProcurementTissue DonorsVaccinationConceptsHealth care proxyProstate cancer screeningCancer screeningHealth screeningHealth promotionInvasive proceduresAdvance directivesScreening testHealth preventionOrgan donationOlder adultsCommunity-dwelling older adultsYears of ageInfluenza vaccinationEffect of ageCholesterol screeningRectal examinationMean ageResearch RegistryResponse rateScreening toolDescriptive studyPhysiciansRegular participationPrevention activities
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