Contact us at  

Bringing new light to our understanding of childhood developmental disorders!

Research Opportunity

What is TORCH?  The OHSU Repository for CHildhood developmental disorders. TORCH is a new effort by a team of clinicians and researchers at OHSU to create a research repository and registry that will transform our understanding of childhood developmental disorders, such as autism, intellectual disability, epilepsies, developmental delays, or related conditions.

Why now?  New technologies have the potential to revolutionize our understanding of developmental disorders. We now know of many genes that, when disrupted, are likely to cause developmental issues, such as autism. By studying groups of individuals that share the same genetics, we are starting to make real progress in understanding the underlying cause of these disorders.

What’s different about TORCH?  We know that every child is unique and we are focused on research to bring personalized medicine to individuals with developmental disorders. Human development is complex and one surprising thing we’ve learned is that many genes play important roles across developmental disorders. Moving forward, we are proposing a new model where individuals with developmental disorders are studied together, based on their shared genetic or other risk factors, regardless of their clinical diagnosis.

Why me?  You and your family can be active participants in the process of discovery! The repository's purpose is to collect biological samples and/or information from people with developmental disorders and their relatives. Information stored securely in the registry will allow us to contact participants with important new information about these disorders, including research study opportunities. Using these samples, we aim to identify the underlying causes leading to developmental disorders and to develop new individually targeted interventions/treatments.

  • You may be eligible to participate if you have or are related to someone that has a developmental disorder or related condition.
  • Participation can take place at‑home or may include 1 visit to OHSU. It is expected to take 1‑2 hours.
  • You may be invited to participate in specific future studies.
  • To find out more, email or call study coordinator Sarah Mastel at / 503-494-2442.

Principal investigator: Brian J. O’Roak, Ph.D. Co‑investigators: Lark Huang‑Storms, Ph.D., Kory Keller, M.S., C.G.C., Trevor A. Hall, Psy.D., A.B.Pd.N., and Eric Fombonne, M.D.

Consent Forms

Consent forms for parents to provide consent for themselves or for their minor children:

TORCH Repository

NF-1 Study

SFARI Twin Study  

Child Assent Forms

Consent forms for children ages 7-17 who are capable of understanding what they're agreeing to:

TORCH Repository

NF-1 Study

SFARI Twin Study