In 2018, 25 sickle cell disease (SCD) stakeholder groups released the State of Sickle Cell Disease (SCD): 2018 Report Card as a way to assess the state of SCD since the 2016 report card was released, identify the greatest opportunities for improvement, and highlight actions needed to make a significant difference in SCD access to care, education, research, and global issues. This year, during Sickle Cell Awareness Month in September, we plan on releasing an updated report card, which will showcase how much progress has been made over the past two years, as well as how much work still needs to be done.
We have developed a survey that will help us determine where SCD currently stands. As an individual living with SCD or individual working in an area related to the disease, we ask that you take this survey so that we can determine how well we are doing in four main areas: access to care, training and professional education, research and clinical trials, and global issues. Detailed instructions are included in the survey portal. You are asked to respond anonymously as individuals, not as representatives of your institution or organization.
We kindly request that you complete this survey by Monday, July 6. Please feel free to share the survey with others in the SCD community.