grant
Patient-centered endpoints, novel biomarkers, and long-term outcomes of high impact chronic pain in sickle cell disease: Sickle Pain Related Impact (SPiRIt-2) Study
NIHUS FederalResearch GrantFY202621+ years old3-D3-Dimensional3DActive Follow-upAddressAdultAdult HumanAffectAfrican AmericanAfro AmericanAfroamericanAgeBiological MarkersBiometricsBiometryBiostatisticsBlack AmericanBlood DiseasesBlood PlasmaCaringCharacteristicsClassificationClinicalClinical TrialsCluster AnalysesCluster AnalysisComplementComplement ProteinsDNA TherapyDisparitiesDisparityEmotionalFeedbackFrequenciesFutureGene Transfer ClinicalGenetic InterventionHSC transplantationHb SS diseaseHbSS diseaseHealth CareHematologic DiseasesHematological DiseaseHematological DisorderHematopoietic Stem Cell TransplantHematopoietic Stem Cell TransplantationHemoglobin S DiseaseHemoglobin sickle cell diseaseHemoglobin sickle cell disorderHereditaryInheritedInterventionIntervention TrialInterventional trialInvestigatorsLabelLength of StayLifeLived experienceLived experiencesLongitudinal StudiesLongitudinal SurveysLongitudinal observational studyMachine LearningMass Photometry/Spectrum AnalysisMass SpectrometryMass SpectroscopyMass SpectrumMass Spectrum AnalysesMass Spectrum AnalysisMeasuresModelingNecrosisNecroticNumber of Days in HospitalOrganOutcomePainPain interferencePainfulPatient Outcomes AssessmentsPatient Reported MeasuresPatient Reported OutcomesPatient Self-ReportPatient outcomePatient-Centered OutcomesPatient-Focused OutcomesPersonsPhenotypePhysical FunctionPlasmaPlasma ProteinsPlasma SerumPremature MortalityProteomicsPsychologyRegulatory approvalResearchResearch PersonnelResearch ResourcesResearchersResourcesRespondentReticuloendothelial System, Serum, PlasmaRiskRisk FactorsScienceSelf CareSelf EfficacySelf-ReportSensorySickle Cell AnemiaSocial FunctioningSubgroupSystemSystematicsTestingTimeTranslatingValidationWorkactive followupadulthoodagesbio-markersbiologic markerbiomarkerblood disorderblood stem cell transplantationblood-based biomarkerblood-based markercentral sensitizationchronic paincohortcomplementationdecrease disabilitydecrease in disabilitydetermine efficacydisability reductionefficacy analysisefficacy assessmentefficacy determinationefficacy evaluationefficacy examinationemotional functioningevaluate efficacyevidence baseexamine efficacyexperiencefollow upfollow-upfollowed upfollowupfunction sociallyfunctioning socialgene repair therapygene therapygene-based therapygenetic therapygenomic therapyhematopoietic cell transplantationhematopoietic cellular transplantationhematopoietic progenitor cell transplantationhigh riskhigh risk grouphigh risk individualhigh risk peoplehigh risk populationhospital dayshospital length of stayhospital stayimprovedindividual heterogeneityindividual variabilityindividual variationlessen disabilitylong term observational studylong-term studylongitudinal outcome studieslongitudinal research studymachine based learningminimize disabilitymitigate disabilityneuropathic painnew markernovelnovel biomarkernovel markeropiate consumptionopiate drug useopiate intakeopiate useopioid consumptionopioid drug useopioid intakeopioid usepain catastrophizingpain outcomepain-related outcomepainful neuropathypatient centeredpatient orientedpatient oriented outcomespersonal carepreferenceprotein biomarkersprotein markersproteomic signaturepsychologicpsychologicalreduction in disabilityregulatory authorizationregulatory certificationregulatory clearancesexsickle cell diseasesickle cell disordersickle diseasesicklemiasicklingslow disabilitysocialspecific biomarkersthree dimensionaltraitvalidations
Description preview
ABSTRACT
Sickle cell disease (SCD) is a rare inherited multi-system blood disorder that affects about 100,000 persons in
the US, almost all of whom are Black or African American. Most adults with SCD experience chronic pain (CP),
i.e., pain on most days of the month for 6 months or more, and poor outcomes. SCD CP is further complicated
by…
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