View Full Version : Help cure ADHD by creating a large registry of people with ADHD


Spaceout
12-16-14, 08:50 PM
When I was an international member of CHADD (Children and Adults with ADHD) (an organisation that supports people with ADHD all across the US and the world) I received the following "call for action" a while ago:


Help Cure ADHD!

Dear Spaceout,
You have a wonderful opportunity to help researchers make a dramatic leap forward in our understanding and treatment of ADHD. CHADD is applying for a grant to develop a large national registry of at least 50,000 children and adults with ADHD. A registry is used by scientists and researchers studying a particular health issue. We are working with the Developmental Behavioral Pediatrics Research Network (DBPNet) and ADHD researchers from 12 hospitals around the country on this exciting project.
Here's how you can help! Please take a moment to answer a very short survey. Let's demonstrate that people with ADHD want to partner with the research community in developing a better understanding of this disorder and more effective treatments. This will be a unique registry because families and individuals with ADHD will have a greater voice in determining what research is done. Better research means greater understanding, better outcomes for people with ADHD... and maybe even a cure! Please take 5 minutes right now to answer the survey.
CHADD & DBPNet
Please take a moment to answer these questions from your perspective as a person with ADHD or a family member of someone with ADHD.
Thank you!

Ruth Hughes, PhD
CHADD CEO
But I am now not a member of CHADD anymore and not sure what happenend to this project. Is anybody here a CHADD member and knows more about that?

I really hope that they will continue with things like this because it has been shown just this summer with a breakthrough in Schizophrenia that it is definetely possible to uncover the genetic basis of psychiatric disorders if one only has enough people (they had 37,000). The Broad Institute in Boston, who did this research, also received the incredible amount of $650 Million Dollars (!!) by a philantropist to study the genetics of mental disorders in the coming years and speed up the developements of new treatments...
(You can read and see more about this here: Broad Institute Ground Breaking Announcement (https://www.broadinstitute.org/broadlive))

Why can't we all do that for ADHD as well?? I think if all members here would take part, we would have at least 10,000 people which would be a great start to dramatically accelerate the developement of science...

Would you participate in such a registry if your privacy was protected?

mctavish23
12-17-14, 09:21 PM
I was, but didn't renew professional membership, after retiring. CHADD is legit tho, but it's

obviously up 2 u.

Good Luck.

mctavish23

(Robert)