ASCENT: PILOT AND EXPLORATORY CORE (PILOT) PROJECT SUMMARY/ABSTRACT In response to the growing population of individuals and families impacted by serious illness and the need for a national research infrastructure that supports growth of the evidence-base to improve serious illness care, the Pilot and Exploratory Studies Core (Pilot Core) of the Advancing the Science of Palliative Care Research Across the Lifespan (ASCENT) Consortium will initiate and support seed projects and their investigative teams with high potential to advance the science of palliative care across the lifespan. Building the evidence base for individuals with serious illness and their caregivers across the lifespan is a critical priority. To date, six National Academies of Sciences, Engineering and Medicine (NASEM) reports and proceedings have summarized data across multiple settings and diseases that reported the high prevalence and severity of physical and psychosocial suffering associated with serious illness, including cancer and Alzheimer’s disease/Alzheimer’s disease related dementias (AD/ADRD). However, the current national infrastructure is inadequate to fund and support innovative pilot and exploratory projects that generate essential foundational evidence that can be implemented in practice to address suffering due to serious illness. Serious illnesses, such as advanced cancer, advanced organ diseases, genetic and developmental disorders, infectious diseases, multimorbidity, AD/ADRD, and frailty – as well as the associated patient and caregiver suffering – all fall under the umbrella of palliative care research. To address this need and catalyze growth of research that will build the evidence base for palliative care, the purpose of the Pilot Core will be to provide funding, guidance, and support for pilot and exploratory studies that lay the groundwork for larger, more comprehensive, more groundbreaking studies and trials. The types of studies to be supported by the ASCENT Pilot Core will include, but are not limited to, the development or piloting of new interventions that have potential for widescale implementation, exploration of novel methodologies, and initial studies aiming to understand the mechanisms of effective and accessible palliative care. The specific aims of the Pilot Core are to: (1) Create and administer an ASCENT Pilot and Exploratory Grants (Pilot) Program to fund palliative care research projects across the lifespan and a variety of conditions; (2) Foster the growth and development of early and mid-career investigators with funded awards by providing monitoring, feedback, and linkages to ASCENT cores and resources; and (3) Promote a national community of palliative care researchers. The Pilot Core will catalyze the growth of investigators conducting high-quality research that is likely to result in high-impact research funded by large extramural awards, including awards focused on cancer and AD/ADRD. Creating a community of researchers aligned in their mission is a key aspect of the Pilot Core that will benefit and motivate researchers throughout the remainder of their careers.
ASCENT: RESEARCH DESIGN AND METHODOLOGY CORE (DESIGN) PROJECT SUMMARY/ABSTRACT Gaps in scientific evidence hamper the ability to optimize quality of life and other person-centered serious illness outcomes. Although there is a growing body of research addressing the palliative care needs of persons with serious illness (PWSI) over the past two decades, there remains a critical need to improve the breadth, depth, and rigor of palliative care research to advance the science and evidence base for palliative care interventions, practices, and programs that can be successfully implemented to improve serious illness care across the lifespan. The Research Design and Methodology Core (Design Core) of the Advancing the Science of Palliative Care Research Across the Lifespan (ASCENT) Consortium will collaborate with all ASCENT Cores to facilitate rigorous palliative care research by providing guidance and training on research design and methods, developing a sustainable digital library of research methods resources, and conducting knowledge generation projects to advance the field. The Design Core will be organized into four methodologic Hubs:1) Intervention Development, Testing, and Implementation Science in Clinical Trials; 2) Qualitative and Mixed Methods; 3) Biostatistics; and 4) Communication Science. The multi-disciplinary investigative team, and supporting consultants, have been recruited based on complementary areas of expertise in research methods and experience with a range of populations of PWSI including pediatrics, Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD), and cancer. The Design Core work will be achieved through three Aims: 1) Support the design and conduct of high-quality palliative care research by providing consultation and training for investigators to promote the use of innovative and rigorous research designs and methods, in collaboration with the other Cores; 2) Develop and expand sustainable resource infrastructure techniques and services to advance palliative care research methods, including a digital library of guidance documents, peer-reviewed publications, presentations at scientific meetings, study protocols, and standard operating procedures; and 3) Conduct palliative care research knowledge generation projects to address key methodologic questions in the field including intervention adaptation for populations with high PC needs, data integration, a range of biostatistical challenges, and dyadic-triadic communication. The Design Core will change the paradigm of palliative care research by advancing the science of palliative care evidence generation and supporting investigators employing the wide range of design and methodologic approaches required for high-quality, rigorous and effective research to improve the lived experience of millions of persons living with serious illness, including AD/ADRD and cancer, across the lifespan.
