Genetic Contributions to Autism Spectrum Disorders
United States240 participantsStarted 2007-04
Plain-language summary
This study is working towards gaining a better understanding of the genetic and environmental factors involved in autism spectrum disorders (ASD), which includes autism, pervasive developmental disorder (PDD), and Asperger's syndrome. The investigators hope that information gained from this study will lead to new ways of diagnosing and treating ASDs.
Who can participate
Age range
18 Months
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Clinical diagnosis of an Autism Spectrum Disorder (autism, pervasive developmental disorder (PDD), or Asperger's syndrome)
* Age \> 18 months
Exclusion Criteria:
* Do not have the diagnosis of an ASD
* Participation in the "Phenotypic and Genetic Risk Factors in ASD" study at Boston Children's Hospital.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1This study is focused on measuring gene expression levels in people with autism spectrum disorder — can you help me understand what that means for us practically, and whether participating would involve any treatment or just biological sample collection?
2Since this trial is listed as 'active, not recruiting,' does that mean we've missed the window to join, or is it worth reaching out to the research team to ask if exceptions are ever made?
3Given that this is a genetic research study and not a treatment trial, how might the findings from something like this eventually affect the care options available to our family down the road?
4Because this study involves genetic information, what should we know about privacy protections and how our genetic data would be stored, shared, or used beyond this specific study?
5Are there other ongoing studies or current standard-of-care approaches we should be exploring in parallel, since this trial isn't testing any treatments and we may need to look elsewhere for therapeutic options?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.