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Regular Social Butterfly
Posts: 475
Registered: ‎02-22-2011

Re: Brain Health Registry

Message 1 of 6 (5,225 Views)

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

Info Seeker
Posts: 2
Registered: ‎05-27-2015

Re: Brain Health Registry

Message 2 of 6 (5,243 Views)
Is information about brain tumors given by research analysis?
Info Seeker
Posts: 2
Registered: ‎05-27-2015

Re: Brain Health Registry

Message 3 of 6 (5,244 Views)
 
Regular Social Butterfly
Posts: 475
Registered: ‎02-22-2011

Re: Brain Health Registry

Message 4 of 6 (5,424 Views)

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).

Treasured Social Butterfly
Posts: 19,478
Registered: ‎12-25-2011

Re: Brain Health Registry

Message 5 of 6 (5,433 Views)

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!
Regular Social Butterfly
Posts: 475
Registered: ‎02-22-2011

Brain Health Registry

Message 6 of 6 (5,440 Views)

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.

 

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