Patient Registry Upgraded - Please Update or Register

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Patient Registry Upgraded - Please Update or Register

Postby Connie Lee » Sun Feb 03, 2019 3:58 pm

Hi all,
Our International Cavernous Angioma Patient Registry is a tremendous resource for the research community and for you, our affected families. We have just completed a major upgrade of the tool to allow it to be even more useful, and we would like to encourage you to take the time to update your existing profile or to register if you haven't already. To do so, visit http://www.angiomaregistry.org.

The Cavernous Angioma Registry serves many functions. It:
1) allows us to communicate with you about research studies for which you may qualify.
2) allows us to collect data to get an overview of what our affected members experience. This data is presented in an unidentified, aggregated form to anyone who registers, so you can see the information as well. For example, you can find out what percentage of our registrants have had a hemorrhage or experience headaches.
3) allows you to request enrollment in our genetic testing initiative. We offer free genetic testing to those in the US and Canada with multiple cavernous angioma lesions that can't be explained by a DVA or history of brain radiation and who do not have insurance coverage for testing.
4) allows researchers with approved studies to explore the de-identified data to generate hypotheses for further research and determine whether our registry can be helpful to their recruitment efforts. They are never allowed to know who you are.

When you join the International Cavernous Angioma Patient Registry, you become an invaluable partner in the search for better treatments and a cure!
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Connie Lee
Founder, Angioma Alliance
 
Posts: 463
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia

Re: Patient Registry Upgraded - Please Update or Register

Postby kdahlem » Fri Feb 08, 2019 3:22 pm

Hi everyone!

I joined the registry and it is super quick and easy to do so. I am happy to answer any questions as someone who has already gone through the process. Plus, it is really cool to be able see all of the data about everyone else who has my condition presented in different charts and graphs. It feels good knowing I am contributing to research for better treatments and a cure.
If you have any questions about your account you could also email coordinator@angioma.org.

Have a great day!
Kristen
kdahlem
 
Posts: 2
Joined: Mon Dec 31, 2018 5:01 pm


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