grant
Project 3- Access Study
Organization BAYLOR COLLEGE OF MEDICINELocation HOUSTON, UNITED STATESPosted 15 Sept 2025Deadline 31 Aug 2030
NIHUS FederalResearch GrantFY20250-11 years oldAccess to CareAcuteAdherenceAdvocateAmericanAppointmentAreaBiochemicalBiochemical GeneticsCOVID crisisCOVID epidemicCOVID pandemicCOVID-19 crisisCOVID-19 epidemicCOVID-19 eraCOVID-19 global health crisisCOVID-19 global pandemicCOVID-19 health crisisCOVID-19 pandemicCOVID-19 periodCOVID-19 public health crisisCOVID-19 yearsCare GiversCaregiversCaringCertificationChildChild YouthChildren (0-21)Client satisfactionClinic VisitsClinicalClinical TrialsClinical geneticsCollaborationsCollectionComplexCounselingDiagnosisDietDiseaseDisorderDrugsED visitER visitEducationEducational aspectsEmergency care visitEmergency department visitEmergency hospital visitEmergency room visitEnrollmentEvaluationEventFamilyFoundationsGeneralized GrowthGeneticGenetic CounselingGenomicsGoalsGrowthHealth Care TeamHealth ServicesHealth Services AccessibilityHereditary Metabolic DisorderHospital AdmissionHospitalizationIllness DaysImprove AccessInborn Errors of MetabolismIndividualKnowledgeLaboratoriesLogisticsLongitudinal StudiesLow-Protein DietMeasuresMedicalMedical Care TeamMedical GeneticsMedicationMetabolicMonitorMulti-center studiesMulticenter StudiesNutritionOrphan DiseaseOut-patientsOutcomeOutcome AssessmentOutpatientsParentsParticipantPatient Care TeamPatient SatisfactionPatientsPersonsPharmaceutical PreparationsProtein-Restricted DietProtocolProtocols documentationProviderQOCQuality of CareRandomizedRare DiseasesRare DisorderRegimenReportingResearchRespondentSARS-CoV-2 epidemicSARS-CoV-2 global health crisisSARS-CoV-2 global pandemicSARS-CoV-2 pandemicSARS-coronavirus-2 epidemicSARS-coronavirus-2 pandemicSchoolsSevere Acute Respiratory Syndrome CoV 2 epidemicSevere Acute Respiratory Syndrome CoV 2 pandemicSevere acute respiratory syndrome coronavirus 2 epidemicSevere acute respiratory syndrome coronavirus 2 pandemicSick DaySpecialistStructureSurvey InstrumentSurveysTelemedicineTestingTissue GrowthTravelTreatment ProtocolsTreatment RegimenTreatment ScheduleUS StateVisitWorkaccess gapsaccess to health servicesaccess to servicesaccess to treatmentaccessibility to health servicesacute careavailability of servicescare accesscare providersclinical trial readinesscoronavirus disease 2019 crisiscoronavirus disease 2019 epidemiccoronavirus disease 2019 global health crisiscoronavirus disease 2019 global pandemiccoronavirus disease 2019 health crisiscoronavirus disease 2019 pandemiccoronavirus disease 2019 public health crisiscoronavirus disease crisiscoronavirus disease epidemiccoronavirus disease pandemiccoronavirus disease-19 global pandemiccoronavirus disease-19 pandemicdetermine efficacydietarydietsdrug/agentefficacy analysisefficacy assessmentefficacy determinationefficacy evaluationefficacy examinationenrollevaluate efficacyexamine efficacyexperiencegaps in accessgenetic consultationgenetics clinichealth service accesshealth services availabilityimprovedimproved outcomeinborn metabolism disorderketotic glycinemiaketotic hyperglycinemiakidslong-term studylongitudinal outcome studiesmedical appointmentmeetingmeetingsmetropolitanontogenyorphan disorderparentpatient advocacy grouppropionic acidemiapropionyl coA carboxylase deficiencyrandomisationrandomizationrandomly assignedsatisfactionservice availabilitysevere acute respiratory syndrome coronavirus 2 global health crisissevere acute respiratory syndrome coronavirus 2 global pandemictelehealththerapeutically effectivetreatment accessvideo visitvirtualvirtual health visitvirtual visitweb sitewebsiteyoungster
Description preview
7. ABSTRACT – PROJECT 3 (TELEHEALTH VS VIRTUAL VISITS IN ORGANIC ACIDEMIAS)
In a recent survey from the National Organization for Rare Disorders (NORD), nearly 40% of patients/caregivers
with rare disorders reported traveling more than 60 miles for medical care. The same survey also found that 70%
of respondents would like the option of telehealth…
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