Longitudinal study of cognitive remediation to prepare for transition of care in youth with sickle cell disease
Longitudinal study of cognitive remediation to prepare for transition of care in youth with sickle cell disease
批准号:
10661515
负责人:
Donna Murdaugh
金额:
$11.46万
依托单位国家:
美国
项目类别:
财政年份:
2022
资助国家:
美国
项目状态:
未结题
起止时间:
2022-07-07 至 2027-03-31
关键词:
Admission activityAdolescentAdoptedAdultAdvocacyAfrican AmericanAfrican American populationAgeAntibiotic ProphylaxisAreaBehavioralBrainBrain InjuriesBrain regionCaringCause of DeathCessation of lifeCharacteristicsChildChildhoodChronicClinicalClinical Trials DesignCognitiveCognitive deficitsCognitive remediationConduct Clinical TrialsCoupledDecision MakingDeep SouthDepositionDevelopmentDevelopment PlansDiseaseDisparityEducationEnrollmentErythrocytesEvidence based interventionFoundationsFunctional Magnetic Resonance ImagingFutureGeneticGoalsHealthHealthcareHematological DiseaseImpaired cognitionInfectionInterventionIronK-Series Research Career ProgramsLifeLife ExpectancyLongevityLongitudinal StudiesMalignant NeoplasmsMeasuresMedicalMentorsMethodologyMinority GroupsMorbidity - disease rateNatureNeonatal ScreeningNeurobiologyNeurocognitiveNeurologicNeurophysiology - biologic functionNeuropsychological TestsOutcomeParentsPatient Self-ReportPatientsPatternPrevalencePsychological reinforcementQuality of lifeRandomized, Controlled TrialsReadinessResearchResearch MethodologyResearch PersonnelResearch ProposalsRestRiskScientistSelf AssessmentSelf CareSickle Cell AnemiaStem cell transplantStrokeSurvival RateTestingTimeTrainingTransfusionWaiting ListsWorkYouthacute chest syndromeagedarmcareercareer developmentcognitive changecognitive functiondeprivationearly childhoodefficacy evaluationexecutive functionexperiencefeasibility testingfollow-upgene therapyhigh riskhydroxyureaimprovedindexingmaleminority engagementmultimodal neuroimagingneuralneuroimagingneuromechanismpatient orientedprematurepreventprogramsremediationresponsesatisfactionskillssocial health determinantssuccesssurvivorshiptelehealthvaso-occlusive crisis
中文摘要
项目摘要/摘要
英文摘要
PROJECT SUMMARY / ABSTRACT
Sickle cell disease (SCD) is the most common genetic red blood cell disorder in the African American (AA)
population. Prior to 1970, only half of the children with SCD survived to adulthood. With universal newborn
screening and medical advances (antibiotic prophylaxis, transfusions, hydroxyurea, stem cell transplantation and
gene therapy), survival rates have improved. In patients with SCD, transition from pediatric to adult medical care
is a high-risk period for death. Preventing premature death requires that patients with SCD engage in self-care
as they transition into adulthood. However, cognitive impairment is a pervasive debilitating feature of SCD across
the lifespan, and influences ability to engage in effective decision-making needed for self-care. Additionally,
cognitive impairment is compounded by specific challenges faced by transition-aged youth with SCD due to
health-related disparities and poor social determinants of health. As such, there is an unmet need for patients
with SCD to adopt and assimilate decision-making skills to enhance self-care and self-advocacy, which could
result in improvement in transition of care and independence in adulthood, thus preventing life-threatening
complications and premature death. This study aims to utilize a cognitive remediation program (CRP) delivered
via telehealth to improve decision-making skills necessary for successful transition of care. Scientific Aim 1 will
determine if a 4-week CRP improves transition readiness skills in youth with SCD (10-18y). Persistence of
improvement across time will also be evaluated. Scientific Aim 2 will assess brain-related changes pre- to post-
CRP, in order to identify neurobiological markers related to cognitive changes in youth with SCD after
intervention. Additionally, two exploratory aims will be investigated in order to 1) identify demographic and clinical
characteristics associated with improvement in transition readiness skills post-CRP, and 2) to test the feasibility
and preliminary efficacy of a 1-year post-CRP booster session in order to continue to maintain transition
readiness skills. Overall, this study will promote my long-term career goal of improving quality of life for patients
with SCD and will provide opportunities for additional training and career development. The career development
plan includes formal training in research methodology specific to conducting clinical trials, engagement of
minority populations in research, and neuroimaging methodology and analyses. The scientific and training plans
are supported by a team of experienced mentors and advisors who are committed to the success of this project
and my development as a patient-oriented scientist. The primary mentor is an expert in neurocognitive outcomes
among blood disorders, an experienced mentor of young investigators, and the director of the UAB Institute for
Cancer Outcomes and Survivorship. The results of this proposal will be utilized to form the foundation of a future
clinical trial designed to test the refined CRP among those who are most likely to benefit from the intervention.
This project will strengthen my skills as a clinical researcher, establish an independent research platform, and
make a true contribution towards improving long-term health outcomes in patients with SCD.
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Longitudinal study of cognitive remediation to prepare for transition of care in youth with sickle cell disease
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批准号:10427879
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项目类别:
-
资助金额:$11.46万
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财政年份:2022
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负责人:Donna Murdaugh
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依托单位:
海外基金