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Minnesota autism registry to unite researchers, families

A new voluntary registry for families of children with autism is ready to be utilized.

The Focus in NeuroDevelopment (FIND) Registry will provide participants information about new research and educational opportunities, community groups and other services offered in Minnesota.

The registry is a collaboration led by the University of Minnesota and is bringing together organizations serving people with autism spectrum disorders (ASD), neurodevelopmental disorders (NDD) and other community partners interested in brain development. The first of its kind database has researchers and clinicians excited about the possibilities.

“Our goal is to create a community interested in collaborating to better understand this complex diagnosis and ways to effectively treat people who are affected,” said Suma Jacob, M.D., Ph.D., a researcher with the Department of Psychiatry at the University of Minnesota. “Minnesota currently lacks an organized mechanism for communicating families’ interest to researchers and for matching participants to relevant, available projects.”

According to the Center for Disease Control and Prevention, 1 in 88 children are diagnosed with ASD, a number Jacob says has been rising.

“With this increased rate has come increased interest in research to understand the causes and characteristics of the disorder, as well as to identify effective treatments,” said Jacob. “We are also interested in hearing from families about their needs and experiences in accessing resources for individuals with NDDs.”

For more information on joining the registry or how it may benefit families, email jacoblab@umn.edu  or call 612-624-0116.

Comments
  1. March 24, 2014 1:37 pm | Melodie Rae Says:

    two of my four children have Asperger’s Syndrome/ADHD. One of the four children has Non-Verbal Learning disability/ADHD, also an Autism spectrum disorder. Two of the three children have a different fathers, which makes me think the connection, if it is genetic, is through me. Is it of any value to have a clear genetic link and how is that studied? Are they likely to have children with these disorders?

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