What Does Function Mean to Me? Lunch Workshops Roundtable
Monday, Tuesday & Wednesday from 11:30 AM - 1:00 PM - A box lunch is included.
These interactive and semi-structured facilitated review sessions will bring together patient, provider, researcher and other stakeholders to generate discussion.
Share your perspectives on precision medicine, research, and advocacy addressing neuro-disability and function after neurotrauma.
Despite many people having similar clinical presentation, demographic factors, and response to clinical care, outcome can widely differ among those with SCI and TBI. In addition to demographic, social, and clinical factors, outcome variability also may be attributable to innate biological variation that individuals bring to recovery, their unique response to treatment, and their environment. All of these factors contribute to the function of TBI and SCI survivors over the health span. Building off the momentum of the Precision Medicine Initiative, we have created an opportunity to generate a stakeholder informed assessment of how to best inform a precision research roadmap studying and optimizing function for individuals with SCI and TBI living with trauma related disability.
To facilitate robust scientific and stakeholder engagement, the Neurotrauma 2019 has partnered with the University of Pittsburgh’s Institute for Precision Medicine to host a series of lunch time round table discussions focused on the many facets of function. In collaboration with NNS members, roundtable discussants will host a variety of stakeholders, including neurotrauma survivors, health care practitioners, caregivers and community living advocates. Round table leaders and facilitators, in cooperation with the Rhizome Theater Group will overview the Precision Medicine Initiative and its goals for inclusion of people with disabilities, specifically those with TBI and SCI. Sessions 1 and 2 will focus on SCI and TBI stakeholder discussions that reflect on function from a multidimensional view. At each session, we will record and document different stakeholder interpretations, goals and questions regarding function. Goals and domains for measuring function in the context of Precision Medicine Initiative priorities and research design will be discussed, as well as ideas for major research priorities focused on areas of function relevant to the NNS community. Our final session will center on ideas and ways in which the NNS specifically can engage in and support precision medicine research that focuses on function for TBI and SCI survivors.
Click to view the All of Us Overview
Roundtable Stakeholder Discussions
Chairs: Amy Wagner, MD, University of Pittsburgh, Grace Griesbach, PhD, Centre for Neuro Skills, Alexander Rabchevsky, PhD
Monday Luncheon – Function after SCI
Function after spinal and peripheral nerve injury will be discussed across the basic and clinical research spectrum. Stakeholders will include individuals with spinal cord injury, rehabilitation specialists and research experts in the field. Discussions will be facilitated by these stakeholders. Identification of biomarkers will be discussed. Main functional concerns after SCI will be discussed as well as the identification of gaps in information. Feasibility of reaching functional goals will be discussed. Lunch is included.
Tuesday Luncheon – Function after TBI
Discussion of function after traumatic brain injury will include interpretations from a wide variety of stakeholders invested in research and treatment. Discussions will be facilitated by these stakeholders. Stakeholders will articulate key research issues needed to address the neurobiological constructs of function as relevant to the long-term effects and conditions associated with TBI. Identification of biomarkers and precision medicine targets will be discussed. Feasibility of reaching functional goals will be discussed. Lunch is included.
Wednesday Luncheon – Exploring a Role for TBI & SCI Advocacy
Discussion will be centered on promoting advocacy for research using a 360 degree approach. Ideas and goals for exploring and developing an NNS advocacy agenda will be presented and discussed. Lunch is included.
1) Define needs and gaps in research involved in optimizing function (broadly) for Neurotrauma survivors
2) Delineate how function focused research can enhance the impact that precision medicine research and the NIH All of Us initiative can make for Neurotrauma survivors
3) Collect perspectives on the role that NNS can play with regard to advocacy for Neurotrauma survivors and research.
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