grant
Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
Organization UNIVERSITY OF MIAMI SCHOOL OF MEDICINELocation CORAL GABLES, UNITED STATESPosted 30 Sept 2014Deadline 31 Aug 2030
NIHUS FederalResearch GrantFY2025ALS patientsAcademyAddressAggregated DataAmericanAmyotrophic Lateral SclerosisAmyotrophic Lateral Sclerosis Motor Neuron DiseaseAmyotrophic Lateral Sclerosis patientsAntisense AgentAntisense OligonucleotidesBiologicalBiological MarkersBlood PlasmaCOVID 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 yearsCardiacCessation of lifeCharacteristicsClinicClinic VisitsClinicalClinical DataClinical ResearchClinical StudyClinical TrialsCohort StudiesCollectionComplexConcurrent StudiesConsumptionDNADataData AggregationData CollectionData SetDeathDedicationsDeoxyribonucleic AcidDevelopmentDiseaseDisease ProgressionDisorderEHR systemElectronic Health RecordEnrollmentEnsureEnvironmental FactorEnvironmental Risk FactorExclusionExperimental TherapiesFamilyFamily memberFeedbackForced Vital CapacityForensic MedicineForensicsFundingGehrig's DiseaseGeneticGenetic predisposing factorGenotypeGoalsHMSN Type VHereditary Motor-Sensory Neuropathy with Pyramidal SignsHereditary Spastic ParaplegiaHourIRBIRBsIndividualInstitutional Review BoardsInvestigational TherapiesInvestigational TreatmentsLateral SclerosisLegal patentLou Gehrig DiseaseMeasuresMonitorNatural HistoryNeurologyObservation researchObservation studyObservational StudyObservational researchOrphan DiseaseParticipantPatentsPatient CarePatient Care DeliveryPatient Outcomes AssessmentsPatient Reported MeasuresPatient Reported OutcomesPatientsPerformancePersonsPhenotypePlacebosPlasmaPlasma SerumPopulationPrimary Lateral SclerosisProceduresProgressive Muscular AtrophyProgressive Myelopathic Muscular AtrophyProtocolProtocols documentationQOCQuality of CareRare DiseasesRare DisorderReportingResearchResearch ResourcesResearch SupportResourcesReticuloendothelial System, Serum, PlasmaSARS-CoV-2 epidemicSARS-CoV-2 global health crisisSARS-CoV-2 global pandemicSARS-CoV-2 pandemicSARS-coronavirus-2 epidemicSARS-coronavirus-2 pandemicSamplingSevere Acute Respiratory Syndrome CoV 2 epidemicSevere Acute Respiratory Syndrome CoV 2 pandemicSevere acute respiratory syndrome coronavirus 2 epidemicSevere acute respiratory syndrome coronavirus 2 pandemicSham TreatmentSiteSpastic Paraplegia-Hypertrophic Motor-Sensory NeuropathySpecialistSurrogate MarkersTherapeuticTimeTransmissionTreatment EfficacyTroponin TType V Hereditary Motor and Sensory NeuropathyUnited StatesVisitVital StatusVital capacityantisense oligoarmbio-markersbiologicbiologic markerbiomarkerbiomarker developmentbiomarker discoverycare for patientscare of patientscaring for patientsclinical careclinical trial readinesscohortcoronavirus 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 pandemiccostdevelopmentalelectronic health care recordelectronic health medical recordelectronic health plan recordelectronic health record systemelectronic health registryelectronic medical health recordenrollentire genomeenvironmental riskexperimental therapeutic agentsexperimental therapeuticsfull genomegenetic risk factorgenome sequencingimprovedindexingindividualized therapeuticinherited factorinterestintervention efficacymortalitymultidisciplinarynew drug treatmentsnew drugsnew pharmacological therapeuticnew therapeuticsnew therapynext generation therapeuticsnovelnovel drug treatmentsnovel drugsnovel pharmaco-therapeuticnovel pharmacological therapeuticnovel therapeuticsnovel therapyorphan disorderpatient populationpatient subclasspatient subclusterpatient subgroupspatient subpopulationspatient subsetspatient subtypespersonalized therapeuticphenotypic dataplacebo control trialplacebo controlled trialprogramsprogressive spinal muscular atrophyrate of changesevere acute respiratory syndrome coronavirus 2 global health crisissevere acute respiratory syndrome coronavirus 2 global pandemicsham therapystructured datasurrogate bio-markerssurrogate biomarkerssystems researchtherapeutic agent developmenttherapeutic developmenttherapeutic efficacytherapy efficacytooltransmission processtropomyosin binding protein troponin Twhole genome
Description preview
PROJECT SUMMARY (Project 1: CAPTURE-ALS)
Natural history studies are critical for improving clinical trial readiness in rare diseases. Amyotrophic lateral
sclerosis (ALS) and related disorders such as progressive muscular atrophy (PMA) and primary lateral
sclerosis (PLS) are no exception. While natural history data from these populations might be…
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