Contact PI/Project LeaderCREUTZFELDT, CLAIRE JOHANNA
Awardee OrganizationUNIVERSITY OF WASHINGTON
Description
Abstract Text
Project Summary
): Palliative care is an approach to medical care that focuses on helping patients and families live well with persistent and serious illnesses through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Neuropalliative care is an emerging field of medicine dedicated to improving the quality of care for people living with neurological disorders and their families using a palliative care framework. The International Neuropalliative Care Society (INPCS) was founded in 2021 to foster growth in this field by creating a community that is interdisciplinary (embracing the full spectrum of disciplines involved in neuropalliative care), person-centered ( inviting persons living with these disorders and their families to have an equal seat at the table) and international (embracing the concept that we can learn from different models of care and that people living everywhere deserve access to high-quality palliative care). The Neuropalliative Care Research Symposium (NeuroCaReS) will be held at The Slate Denver in Denver, Colorado on April 12 and 13, 2024, directly preceding the annual meeting of the American Academy of Neurology (AAN). The INPCS has committed funds to partially support this symposium. The overall goal of this interdisciplinary research symposium is to bring together a diverse group of stakeholders including clinicians, researchers, and patient/family advocates with a common interest in understanding and advancing patient-reported outcomes research in Neuropalliative care. The symposium is unique in that it will provide a forum to present and discuss (1) the latest advances in clinical study design and research tools, including behavioral research methodologies for intervention development and implementation using the NIH stage model and Science of Behavior Change (SOBC); (2) methods to reduce racial inequities in healthcare and research and improve diversity, equity, and inclusion in neuropalliative care research; and to (3) train the next generation of neuropalliative care investigators. The need for the design of adequate research studies and uniform data collection in Neuropalliative Care will also be addressed. The symposium will consist of three round table discussions, six scientific sessions, and three junior investigator mentoring workshops. We anticipate approximately 60 attendees. The Organizing Committee consists of the co-directors of the INPCS research committee. Invited speakers include members of the neuropalliative care research community but with various research interests that represent the integrated educational concept of the conference. At the conclusion of the conference, participants should be able to: 1) understand the importance and opportunities for Neuropalliative care research; 2) discuss recent scientific advances related to the assessment of outcomes and interventions that will have an impact on Neuropalliative care research; 3) determine future directions of Neuropalliative research with a focus on equity-oriented and race-conscious research; and 4) enhance collaboration of researchers in the broad space of palliative care. All presentations will be videotaped and presented on the INPCS website for general public access (the website has been established since 2021). Furthermore, invited speakers will be asked to submit manuscripts related to their topic for peer review and publication in the Annals of Palliative Medicine.
Public Health Relevance Statement
Project Narrative
The emerging clinical subspecialty of Neuropalliative care has grown substantially over the past several years, and Neuropalliative care research has seen its first randomized controlled trials. The Neuropalliative Care Research Symposium will bring together a diverse group of stakeholders including clinicians, researchers, and patient/family advocates from many fields and disciplines with a common interest in understanding and advancing research in Neuropalliative care and moving the field forward.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AcademyAddressAdoptionAdultAdvocateAffectAgeAmericanAttentionBehavioralBehavioral ResearchCaregiver BurdenCaringClinicalClinical InvestigatorClinical ResearchCollaborationsColoradoCommunicationCommunitiesComplexConsciousData CollectionDedicationsDependenceDevelopmentDiagnosisDisciplineDiscipline of NursingDiseaseDisparityEarly identificationEducationEducational workshopEquityFaceFacultyFamilyFamily CaregiverFamily memberFellowshipFosteringFundingFutureGeneral PopulationGeriatricsGoalsGrief reactionGrowthHealthHealthcareHeart failureHospice CareIncidenceInterdisciplinary StudyInternationalInterventionInvestigationLearningLongevityMalignant NeoplasmsManuscriptsMechanical ventilationMedicalMedicineMentorsMethodsMissionModelingNational Institute of Neurological Disorders and StrokeNervous System DisorderNeurologicNeurologyOutcome AssessmentOutcomes ResearchPainPain managementPalliative CarePalliative MedicineParticipantPatient CarePatient Outcomes AssessmentsPatientsPeer ReviewPersonsPrevalencePreventionPrognosisPsychologyPublicationsQuality of CareQuality of lifeRaceRandomized, Controlled TrialsResearchResearch ActivityResearch DesignResearch MethodologyResearch PersonnelRoleScienceScientific Advances and AccomplishmentsSocial SciencesSocial WorkSocietiesSpecialistSpiritualitySymptomsTimeTrainingTravelUnderrepresented MinorityUnited States National Institutes of HealthVideotapeadvanced directivebehavior changedesigneducation researchend of lifeend of life careequity, diversity, and inclusionevidence baseexperiencehealth inequalitiesimprovedinformal caregiverinterestmeetingsmembernext generationnon-motor symptompalliativepatient orientedperson centeredpreventpsychologicpsychosocialracial disparityracismresearch studyscience and societysocialsymposiumtherapy developmenttoolweb site
National Institute of Neurological Disorders and Stroke
CFDA Code
853
DUNS Number
605799469
UEI
HD1WMN6945W6
Project Start Date
01-February-2024
Project End Date
31-January-2026
Budget Start Date
01-February-2024
Budget End Date
31-January-2026
Project Funding Information for 2024
Total Funding
$24,780
Direct Costs
$24,780
Indirect Costs
Year
Funding IC
FY Total Cost by IC
2024
National Institute of Neurological Disorders and Stroke
$24,780
Year
Funding IC
FY Total Cost by IC
Sub Projects
No Sub Projects information available for 1U13NS134263-01
Publications
Publications are associated with projects, but cannot be identified with any particular year of the project or fiscal year of funding. This is due to the continuous and cumulative nature of knowledge generation across the life of a project and the sometimes long and variable publishing timeline. Similarly, for multi-component projects, publications are associated with the parent core project and not with individual sub-projects.
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Outcomes
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Clinical Studies
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