Proceedings of the First Neuropalliative Care Research Summit (NeuroCARES).

Neuropalliative care is a rapidly evolving field of healthcare that is essential for addressing the complex needs of individuals with serious neurological disorders and their care partners. Effectively addressing these needs will require advances in Neuropalliative care research designed to improve the quality of life for all people affected by neurological disorders and their care-partners. On April 12, 2024, the first Neuropalliative Care Research Summit (NeuroCARES), funded by the National Institute of Neurological Disorders and Stroke (NINDS) and supported by the International Neuropalliative Care Society (INPCS), provided an opportunity for clinicians, researchers, representatives from NIH and patient and family advocates to come together to identify and discuss neuropalliative care research challenges and opportunities.

Patients' and Caregivers' Perceptions of Specialty Palliative Care for Amyotrophic Lateral Sclerosis: A Multicenter Evaluation.

Introduction/aims: Specialty palliative care (SPC) aims to optimize quality of life for people with life-limiting illnesses. Previous studies support benefits of SPC for people with amyotrophic lateral sclerosis (pALS) and their caregivers; however, few studies have compared patient and caregiver experiences with ALS care and SPC.

Methods: An online survey assessing satisfaction with care was distributed to pALS and caregivers who had received SPC.

Lessons Learned from a Parkinson's Research Patient Advisory Board Model with Academic Centers.

Background: There is minimal comparative effectiveness research (CER) in Parkinson's disease (PD). Engaging people with PD in the research process through patient advisory boards (PAB) is one way to address this gap.

Objectives: To describe the project model and lessons learned from a PAB pilot project in five Parkinson's Foundation Centers of Excellence in CER.

Strengths and Opportunities: Clinicians' Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (ALS) in the United States.

Introduction/aims: Little is known about the state of palliative care (PC) for people with ALS (pALS) in the U.S. We aimed to examine current practice regarding PC for pALS and how it can be improved.

Spiritual Well-Being and Phenoconversion in Huntington's Disease: Analysis from the Prospective Huntington at Risk Observational Study.

Spiritual well-being (SWB) has been shown to delay the onset of cognitive decline among older adults predisposed to Alzheimer's disease and related neurodegenerative dementias. It was, however, unknown if SWB is also associated with delay in disease manifestation ("phenoconversion") in rare, genetic neurodegenerative dementias, such as Huntington's disease (HD). Thus, we sought to evaluate the association between SWB and phenocovnersion in people at-risk for HD.