History
The GOAL cohort is derived from a population-based lupus registry, the Georgia Lupus Registry (GLR). Creation of the GOAL cohort using the GLR represents a unique and noteworthy element of our study. By recruiting from the GLR, our cohort closely mirrors the population of lupus patients in the metropolitan Atlanta area. Additionally, people with lupus treated at the Grady Health System, Emory Healthcare and community rheumatologists are invited to participate in this study. Among the specific aims of the GOAL Study is to follow cohort participants prospectively to identify and address vital issues with respect to disease progression, management, psychosocial factors, and social determinants of health.
Purpose
Many GOAL participants have helped us to understand better the burden of lupus on essential aspects of patients’ lives. We are also learning about the challenges that many patients face with accessing healthcare and managing lupus.
Why do we need your help?
We need your input to build the wealth of knowledge needed to transform health care and improve health outcomes.). The focus of the GOAL Project is to help fight lupus by learning from people living with lupus. GOAL participants are asked to respond to surveys on important issues, such as quality of life, medical services, medications, and lupus outcomes. However, even if you have not been experiencing any lupus symptoms lately or if your lupus has been “quiet” for a while, your participation is still very valuable.
Determinants of health vary on an individual level across many factors that impact daily life. By understanding how lupus has impacted your life, we can better direct further research to improve lupus management and inform policymakers of changes that need to be done.
Your unique experiences living with lupus are tremendously valuable. You might wonder what real impact you may have by becoming a GOAL member. Through every person’s story, we can identify the sources of health disparities and the needs of different lupus patients. This information is vital not just for medical researchers; it may also help policymakers to improve the health care system and the services for those with lupus. Ultimately, the information obtained through GOAL could be used to make treatments and services more tailored, accessible, and affordable.
Our Action Call
Even if you have not been experiencing any symptoms lately, we would still like to encourage you to consider participating. We will be asking you questions about your health and your experiences living with lupus through easy to complete surveys, just a few times a year at most. Your participation is voluntary. Just a little bit of your time could have a huge impact!