Congress Agrees on a Tax Bill. What Does Proposed Tax Bill Mean for Older Americans? Learn More.

Reply
Regular Social Butterfly

Re: Brain Health Registry

5,517 Views
Message 1 of 6

Uhhh dp5034 - I don't understand your question...  "given" to whom?

Report Inappropriate Content
Info Seeker

Re: Brain Health Registry

5,535 Views
Message 2 of 6
Is information about brain tumors given by research analysis?
Report Inappropriate Content
Info Seeker

Re: Brain Health Registry

5,536 Views
Message 3 of 6
 
Report Inappropriate Content
Regular Social Butterfly

Re: Brain Health Registry

5,716 Views
Message 4 of 6

Good questions Astraea - 

 

This is from their FAQs:

 

WHAT IS MY INFORMATION USED FOR:

We will use your information for research. We collect information about your identity, your health, your behavior, and your cognitive function. This information will be used in research analyses and results of these analyses may be presented in scientific conferences and published. In the event this occurs, the presentations and publications will never include any information that could identify you in any way.

Based on the needs of the scientific and medical communities, we may use your information to identify potential participants for clinical trials to test diagnostic tools and potential therapies for brain disorders. Brain Health Registry participants will only be contacted about participating in clinical trials that have already been reviewed and approved by Institutional Review Board (also known as ethics boards). Once given the opportunity to participate in such a clinical trial, the choice to participate or not will always be yours.

Participation in the Brain Health Registry involves completing some research assessments through commercial providers and some of the research procedures require involvement via an internet connection. Due to this, there may be increased confidentiality risks associated with study participation. However, no personally identifiable information will be provided to our commercial providers and we take every step possible to ensure the information you provide to the Brain health Registry is kept safe and secure.

 

WILL THE INFORMATION I GIVE  AND MY COGNITIVE TEST RESULTS BE SHARED WITH OTHERS:

The personal information you provide to the Brain Health Registry is only used for the purposes stated in our consent form and privacy statement. Information about Registry participants may be shared with our collaborators, but that data is de-identified (meaning the data we provide cannot be traced back to you).

Report Inappropriate Content
Treasured Social Butterfly

Re: Brain Health Registry

5,725 Views
Message 5 of 6

What kind of privacy do you have, if you register on & use their website? It may be "free", but what information do they collect on you, and with whom do they share it?


Registered on Online Community since 2007!
Report Inappropriate Content
Regular Social Butterfly

Brain Health Registry

5,732 Views
Message 6 of 6

www.brainhealthregistry.org

 

is the web site.

 

This is what it is about:  

 

"The purpose of the Brain Health Registry is to promote healthy brain function through the prevention of brain diseases, brain disorders and brain injuries that affect brain function in adults. This is the first neuroscience project to leverage online possibilities in this way and on this large scale."

 

This is something good - and it costs nothing...  Well,,, not quite nothing; it does require that you put your brain to work.  I signed up when they first organized.  I haven't seen any mention of it here in the AARP online community.

 

Check it out.

 

Smiley Very Happy

Report Inappropriate Content