Kaiser Permanente has a long history of autism research. They’ve performed a number of epidemiology studies, including many on environmental risk factors and also the recent study on The health status of adults on the autism spectrum. They have recently embarked on a large study, the Kaiser Permanente Autism Family Biobank Study.
You can also find picture books (social stories) for the sample donation process on the Autism Family Biobank website.
From the FAQ for the study, What is the KP Autism Family Biobank?
The KP Autism Family Biobank is a study of Kaiser Permanente Northern California children and young adults with Autism Spectrum Disorder (ASD) and their biological parents. The
study seeks to enroll 5,000 affected children plus their parents (for a total of 15,000 participants) to create a collection of genetic material and information for future research. Dr. Lisa Croen is the principal investigator of the study.
Autism genetics has turned out to be a very complex question. There’s no single “autism gene” but autism clearly has a large genetic component.
What does that mean in practical terms? We need a lot of data to understand the question of autism genetics. And that’s a big piece of what this study will do: bring a lot of data to bear. And not just genetic data. This is a key part of this study and can’t be stressed enough. Kaiser provides healthcare. They have electronic records on their patients. And these patients are the pool from which they will draw their study subjects.
Or to put it simply–they will be able to not only say, “these genes are associated with autism” but “these genes are associated with autism and low verbal skills, while these other genes are associated with autism and regression.” (to give a hypothetical example).
To do this they need a lot of people to participate. They are going to get 5000 autistic kids involved. And they won’t stop there: they will also include parents. That makes 15,000 participants. Not all genes are inherited. With the parents involved, Kaiser can can see if genes associated with autism are inherited or not.
Now many parents will ask (and it’s a valid question), “OK, what will this do for my kid?” It takes time (not a lot, but some) to participate and lots of kids don’t like doctor visits. But consider this: genetics helps people understand biology. With a better understanding of biology, one can make progress towards treatments. There’s a reason why some of the treatments proposed for autism came from research in Fragile-X. People have spent a lot of time studying this genetic condition and that focus has led to proposed treatments.
Or to put the short version of the message out–this isn’t just another genetics study. It’s bigger (15,000 people!) and brings a lot of value with the clinical data that Kaiser has. There’s a chance to have a big impact to better the lives of autistics. If you are a Kaiser member in the study area, please consider participating.
Links and recent news:
Sign up online
First KP Members Join Autism Family Biobank
Kaiser to look for autism’s causes in large-scale study
Study Flyer
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By Matt Carey
Disclosure: I serve on a community advisory board for Kaiser. It is a volunteer position (I.e. I get no pay) and will not benefit from this study any more than anyone else in the autism community. And the decision to conduct this study was made before I became involved with Kaiser.
