Brain Health Community Registry
The Brain Health Community Registry is a network that connects adults and caregivers and researchers.
What is a Community Registry?
The Brain Health Community Registry (BHCR) is a network that connects adults and caregivers interested in brain health with community-based services and researchers who study aging, brain health, and caregiving for people with memory changes. We use the word “registry” to describe a group of people who are interested in having researchers send them different study opportunities that they might be eligible for.
The goal of the registry is to share information about research opportunities related to aging, brain health, and caregiving for people with memory changes and their caregivers, and to make participating in research more accessible.
Check out the 2022 BHCR Summary here!
Why is studying brain health important?
Understanding and protecting our brains is important. A range of diseases and events can impact our brain health including concussions, strokes, Parkinson’s, and dementia.
Did you know that…
- Changes in our brains due to Alzheimer’s disease are thought to begin up to 20 years before we notice any symptoms
- As many as 200 million people around the world have an intellectual disability. This is 1-3% of the global population. Intellectual disabilities are more common in low-income households and communities
Around 60,000 Americans get diagnosed with Parkinson’s Disease each year
The Brain Health Community Registry hopes to help get more people involved with brain health research, which is an important step for better helping the people most impacted by brain health changes and diseases.
Access to research is also essential to understanding and ultimately addressing disparities that exist in brain health.
*Sources: Alzheimer’s Association, Center for Disease Control, World Health Organization, and Parkinson’s Foundation
Who is eligible for participation?
We are currently looking for participants who are:
- 18 years or older that provide care to a family member or friend who is experiencing memory changes. This includes anyone who is experiencing changes in memory such as dementia, a brain injury, or another condition.
- 40 years or older, not experiencing memory changes, and are interested in learning about brain health.
- 40 years or older, experiencing changes in memory, and are interested in learning about brain health. This includes anyone who is experiencing changes in memory such as dementia, Alzheimer’s disease or another condition.
What does participation involve?
To Get Started:
- Talk with our research team for 45-90 minutes about your life. You will receive $10 in cash for your time.
- If you would like to participate, we will save your information so that researchers can ask you to help with their projects. Payment for helping with other research projects will vary.
On an Ongoing Basis:
- You will be contacted with studies you may be interested in.
- The decision to join a study is always up to you!
- For as long as you wish to remain on the list, we will check in with you once a year to note any significant changes to your situation. At each check-in, you will receive $5 in cash.
If you are interested in participating, please read through the informed consent form below:
Join the Registry
Current and Prospective Registry Members
If you have any questions, would like accommodations, or would like to enroll in the registry over the phone or in person, please give us a call at (608) 800-2899, send us an email at firstname.lastname@example.org, or fill out the contact form below and one of our team members will assist you.
You may directly enroll to join the registry here.
Information for Researchers
We are beginning to refer our Registry participants to actively recruiting research studies. Our Registry participants are individuals who are 40 years of age or older experiencing memory changes, 40 years of age or older not experiencing memory changes, and individuals 18 years of age or older who are caring for an individual experiencing memory changes. If you are a researcher interested in collaborating with us, please give us a call at (608) 800-2899 or send us an email at email@example.com.