Wednesday, May 8, 2024
5/8/2024
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.
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