[open-science] Fwd: Announcing: Preview Launch for Registries for ALL!

[Heather Morrison]

Possibly of interest in relation to recent discussion about open data  
and privacy...

Begin forwarded message:

> From: Sharon Terry <sterry at geneticalliance.org>
> Date: February 27, 2013 2:53:14 PM PST (CA)
> To: heatherm at eln.bc.ca
> Subject: Announcing: Preview Launch for Registries for ALL!
>
>
>
> Rare Disease Day – the preview launch for Registries for All
>
> Dear all,
>
> We all know that there is not enough information or resources to  
> support diagnostic and drug development on a scale to match our  
> dreams.  It is time to change that.  We are finding ways to improve  
> health with Registries for ALL.
>
> Individuals need to 'reclaim' their own health.  Reg4All is a place  
> for us to register health information to grow health for ALL.
>
> Reg4ALL is community of people storing and sharing information about  
> ourselves, our health, and our diseases– to improve health and speed  
> therapies across all disease.
>
> Reg4All is unique in 2 ways:
>
> 1. It operates across all health and disease.
>
> 2. Each participant controls everything about their information–  
> what they store, what if anything they share, with whom they share,  
> for what purposes that information may be used– everything. (Unlike  
> systems that either a) allow only a single transaction consent,  
> unnecessarily constricting sharing and bi-directional communication  
> with researchers; or b) overreach in the breadth of their consent  
> coverage to cover too many sharing scenarios)
>
> Reg4All is the health registry for all people, all diseases, all  
> health.
>
> In 2012, we took our idea and competed for the Sanofi US Collaborate  
> Innovate challenge and won!  They awarded us, Genetic Alliance and  
> CFIDS Association of America, National Psoriasis Foundation, and the  
> Inflammatory Breast Cancer Research Foundation, $300,000 to go  
> forward with our idea.  That was December 11, 2012.
>
> Today, February 28, 2013, Rare Disease Day, we launch Registries for  
> All (http://www.Reg4ALL.org).
>
> Reg4ALL is an online health registry that's free and open to  
> everyone.  Using fun and simple surveys (thanks to survey experts,  
> Traitwise), users can register, store information about their  
> health, and see how their answers compare with other users'.  Next,  
> they can selectively share that information in whatever manner they  
> feel comfortable, and use Reg4All to connect with the disease  
> advocacy community and other helpful resources.  Finally, Reg4ALL  
> aims to transform the way that medical research is done, and  
> facilitate connections between researchers and potential  
> participants - Reg4ALL is perfect for those who want to spark  
> medical innovation and propel breakthroughs.
>
> To make sure that all of the information in Reg4ALL respects the  
> privacy and access wishes of the participants, we have partnered  
> with Private Access, an industry leader in privacy and security.   
> But at Genetic Alliance, we understand that the members of our  
> community are not interested in just keeping information locked  
> away.  We want it to be used to improve the health of the people we  
> care about - in a way that still respects our privacy.  To make this  
> possible, Reg4ALL users can also connect with researchers and be  
> pointed towards clinical trials that match their needs and desires.  
> Every Reg4ALL user can configure Reg4ALL's unique privacy settings  
> to reflect his or her own feelings about privacy, as simple or  
> complicated as that may be.  For example, a user might consent to  
> letting researchers see his data, but only some researchers, such as  
> just those researchers who have a stamp of approval from an advocacy  
> group that they know and trust.  Together, we can change the way  
> that researchers and research participants connect, and accelerate  
> health research like never before.
>
> We see so much potential for Reg4LL, and we hope you do, too.  Come  
> join us at Reg4ALL.org, beginning today. Look forward with us to the  
> full featured broad launch on April 5, 2013.  And if you need  
> information about any one of 13,000 diseases, check out Disease  
> InfoSearch!
>
> Happy Rare Disease Day,
>
> Sharon Terry, for Genetic Alliance
>
> ----------------------------------------------------------------
> Sharon Terry | President and CEO
> Genetic Alliance | 4301 Connecticut Ave., NW | Suite 404 |  
> Washington, DC  20008-2369
> Phone: 202.966.5557 | Fax: 202.966.8553 | sterry at geneticalliance.org|
>
> Donate: www.geneticalliance.org/donate
> Twitter: @sharonfterry | Facebook.com/sharonterry
> Linkedin.com/in/sharonterry | Ashoka.org/fellow/sharon-terry
>
>
>
>
>
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