grant
Examining the Equitable Integration of Genomics in Health Care and Society
Organization NATIONAL HUMAN GENOME RESEARCH INSTITUTELocation UNITED STATES
NIHUS FederalResearch GrantFY20250-11 years old21+ years oldAddressAdultAdult HumanAdvocacyAdvocateAttenuatedAttitudeAwarenessBiomedical ResearchCRISPRCRISPR/Cas systemChildChild YouthChildren (0-21)ClinicalClinical DataClinical TrialsClustered Regularly Interspaced Short Palindromic RepeatsCommunitiesDNA TherapyDecision MakingDescriptorDevelopmentDiffusionDiseaseDisorderEducational MaterialsEquityEthnic GroupEthnic OriginEthnic PeopleEthnic PopulationEthnic individualEthnicityEthnicity PeopleEthnicity PopulationFocus GroupsFutureGene Transfer ClinicalGenesGeneticGenetic DiversityGenetic InterventionGenetic VariationGenomic medicineGenomicsGerm LinesGoalsGovernmentHb SS diseaseHbASHbSS diseaseHealthHealth CareHematologistHemoglobin S DiseaseHemoglobin sickle cell diseaseHemoglobin sickle cell disorderHistoryHuman GeneticsIndividualIndustryInstitutionInvestigatorsLow-resource areaLow-resource communityLow-resource environmentLow-resource regionLow-resource settingMedicalMedicineMethodsMinorityParentsPatient CarePatient Care DeliveryPatient EducationPatient InstructionPatient TrainingPatientsPhysiciansPopulationProcessProviderPublishingRaceRacesRacial GroupRecommendationRecording of previous eventsResearchResearch PersonnelResearch ResourcesResearchersResource-constrained areaResource-constrained communityResource-constrained environmentResource-constrained regionResource-constrained settingResource-limited areaResource-limited communityResource-limited environmentResource-limited regionResource-limited settingResource-poor areaResource-poor communityResource-poor environmentResource-poor regionResource-poor settingResourcesRiskSamplingScienceServicesSickle Cell AnemiaSickle Cell TraitSocial NetworkSocial PowerSocial isolationSocietiesSociologyUS StateValidationWomanWorkadulthoodattenuateattenuatesblack femaleblack womencare for patientscare of patientscaring for patientsclinical carecohortcommunity based organizationscommunity organizationsdevelopmentaldiffuseddiffusesdiffusingdiffusionseducation resourceseducational resourcesethnic subgroupethnicity groupgene repair therapygene therapygene-based therapygenetic therapygenome medicinegenomic therapyhistoriesimprovedkidslow income countrymeetingmeetingsnovelparentpreferenceprenatal screeningprenatal testingpsychologicpsychologicalpublic trustracialracial backgroundracial originracial populationracial subgroupresearch studysickle cell diseasesickle cell disordersickle diseasesicklemiavalidationswillingnessyoungster
Description preview
With rapid advancements in genomic research, we are at a point where curative genetic therapies (gene therapy and gene editing) are being used in clinical trials. We use mixed-methods to study the views and opinions of SCD community stakeholders (adults living with SCD, parents of individuals with SCD, and SCD providers) and conduct normative…
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