Grant: Project Grant - Priority Announcement: Patient-Oriented Research

What is the problem?: In research studies, clinicians and researchers measure specific signs of injury or recovery called 'outcomes' to measure success. In bleeds in the brain from a burst artery (called subarachnoid hemorrhage or 'SAH' for short), there is little consistency in reporting outcomes, literally hundreds exist. We use tools that were not informed by SAH patients and made for use in other diseases. No set of agreed upon measures of outcome in SAH research has been established. As a result, we cannot learn from combining study results and research looking at SAH may be misinformed by not looking at the outcomes that make the biggest difference in the lives of those affected by SAH. Who are we and what will we do?: Our team is made up of patients, families, researchers and clinicians from around the world. Our goal is to create a list of outcomes that all three groups value, agree on, and think should be included in all future research in SAH, called a Core Outcome Set (or "COS"). To create a COS for SAH, we will focus on 'what' outcomes, and 'when', are important to patients/families, clinicians and researchers. How will we do it?: We will achieve this by following a standard and established model with three main steps. First, we will generate full lists of outcomes that each group values by reviewing articles, interviewing people from each group, conducting focus groups, and sending out surveys. Next, each group will rank the outcomes that they think are the most important. We will pool these responses together in the third step and host an in-person meeting with equal representation from the groups. In the end, we will have one prioritized list to be used in and guide future SAH research. Why is this important?: Having a core set of outcomes in SAH that is created by these key groups will help ensure consistency and allow comparisons across studies that are planned with the goal of improving outcomes that matter most to those affected by SAH.