Welcome to the Study Partner Portal of the Brain Health Registry. This exciting new initiative allows you and a study partner (someone who knows you well) to work as a team to advance brain health research and the search for new treatments.
What do I have to do to become a study partner? If you have received an email invitation and have a study code: Register here.
If you do not have a study code: First, enroll in the Brain Health Registry here. Then complete “My Study Partner” in your task list.
What will I be asked to do? Once you've enrolled, tell us as much or as little as you'd like - all questionnaires are optional. You do not have to complete all at once. You can return to the Brain Health Registry website to complete study tasks at your convenience. There is no cost or payment to participate as a study partner.
Why are study partners important for brain health research? Put simply, we are committed to advancing brain health research for all, and your voice as a study partner is a powerful and unique part of that plan.
Focus on outcomes that matter to you. When it comes to brain health, tests of memory and thinking only tell part of the story. Only you and your study partner can tell us about your day-to-day functioning and quality of life. We need you to tell us the whole story, so that we can use this information to improve the quality of life of families.
Focus on change. Because you know each other well, you can give the most accurate information about whether there have been changes in your study partner’s brain health over the past years or months. This helps tremendously because changes in brain health are a very important indicator of what’s to come, more important than a single snapshot in time provided by a simple test.
Your own health matters. For those study partners who are also caregivers, we want to learn more about how caregiving affects your physical health, stress, mood, memory, and more. The information you share with us about your experience can help us improve caregiver health for caregivers in the future.
Strength in numbers. In the battle to improve brain health, you and your study partner together are stronger than each of you alone. You can encourage each other to stay connected, remind each other to complete tasks, and work together as a team each step of the way.