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Brain Health Registry Newsletter - March 2017

Brain Health Registry Newsletter - March 2017

February 2017

 

Brain Health Registry Launches Two New Features: Caregiver and Study Partner Initiative, and Hoarding and Cluttering Questionnaire

 

New online tool brings the unique and powerful voices of care partners front and center in brain health research 

Brain Health Registry (BHR) has launched a new initiative called the Caregiver and Study Partner Portal (CASPP).   This innovative tool allows BHR participants to designate someone who knows them well, such as a family member or close friend, to join BHR as their study partner.  The information gathered from the participant-study partner pair can be used to better identify those at risk for developing brain disease.

How does it work?  Study partners enroll online and answer questions about the participant, such as about recent changes in the person’s memory or thinking.  Study partners also answer questions about themselves, such as whether they are a caregiver, and if so, how that affects their own health. 

How do I join?  Some of you may have already designated a study partner or become a study partner yourself during our “beta testing” phase over the past few months.  If so, thank you—you have provided valuable information, including feedback about your experience that we’ve used to improve the Study Partner Portal.  If you haven’t yet checked out this new feature, here are the next steps to participate:

 

Why are study partners important?  Researchers have long appreciated the unique value of a study partner’s perspective.   Here’s why:

 

We encourage all BHR participants to invite a study partner to join, and to become study partners themselves!

 

Brain Health Registry rolls out Hoarding and Cluttering questionnaire

We are excited to announce another new feature in the Brain Health Registry: The Hoarding and Cluttering module is a new questionnaire that asks about hoarding or cluttering behaviors that you may have, along with questions about related problems.

Why is the study of hoarding and cluttering behaviors important?

 

You can try this new feature today – simply log in to your Brain Health Registry account and the Hoarding and Cluttering questionnaire will show up in your task list.

 

We encourage you to fill out this questionnaire, even if you do not have any hoarding, cluttering, or related problems and completing the questionnaire will only take a few minutes!


We are grateful for your participation in Brain Health Registry. As always, your contributions are critical in helping advance brain health research and developing new treatments to fight brain disease. Thank you for your support.