‘This is citizen science at its best.’
By Phyllis Brown, UC Davis
The ADHD Program at the UC Davis MIND Institute has been selected to participate in an initiative that will link people with the condition in Sacramento and beyond with clinicians, researchers, advocates, support groups and each other, through an innovative privacy-assured online platform called Platform for Engaging Everyone Responsibly, or PEER.
The PEER program will create a customized portal for people with attention-deficit/hyperactivity disorder, funded by a $500,000 grant from the Robert Wood Johnson Foundation, which is underwriting the development of the ADHD site along with approximately 15 others.
PEER is a project of Genetic Alliance, which already has managed the development of portals for a wide array of diseases, many of which are rare genetic conditions, such as Gaucher disease or Joubert syndrome, and others that are more common, such as sickle cell disease and hepatitis.
The PEER platform creates a Web presence that allows people to share their health data, selecting privacy settings with which they are comfortable and that “strike a balance between the desire for solutions to their medical needs and their [concerns] about privacy.”
“The goal is to make the development of registries simple and easy,” said Sharon Terry, president and chief executive officer of Genetic Alliance and co-creator of PEER. “The members of community organizations will just sign up online, create their own instance of the software, and get to work. That is our plan for PEER.”
ADHD is one of several new PEER portals to be developed by PEER/Genetic Alliance. The condition is anything but rare. In fact, it is the most commonly diagnosed psychiatric disorder among children in the United States. Other new PEER collaborators will include the Asthma and Allergy Foundation of America, Celiac Support Association and the Center for Jewish Genetics.
“We’re grateful that the Genetic Alliance and PEER selected the ADHD Program and the MIND Institute as partners in this exciting endeavor,” said program Director Julie Schweitzer. “Through this partnership we can encourage families of people with ADHD to participate in research to help find treatments and possible preventive measures for the condition.”
The ADHD Program will partner with local and national ADHD support groups, including the Parent Education Network (PEN) and Children and Adults with Attention-Deficit Hyperactivity Disorder (CHADD).
“This is citizen science at its best,” Schweitzer said. “Families affected by ADHD will be able to learn information from one another by using a computer from their own homes. And, by sharing their health information, they will help researchers seeking improved treatments for people with ADHD.”
The ADHD Program offers clinical programs for people with ADHD across the lifespan, and conducts research into treatments for the condition.
Schweitzer will collaborate with Nick Anderson, UC Davis professor of informatics.
“We are very enthused to be partners in this unique network – we greatly value advocacy groups’ participation, and the PEER platform provides the best privacy support currently available,” Anderson said.
More information about the institute is available on the Web at mindinstitute.ucdavis.edu.