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The TRIS Survey, Full, MODIFIED and Follow-up versions, is now available for completion online.



The survey collects information about parent and child experiences including pregnancy, labor and delivery, medical needs, educational and therapeutic services and family supports.

TRIS Survey Information

The Full Survey is comprised of three parts. Part I focuses on your pregnancy, your child’s birth and immediate postnatal course. Demographic information is also collected. Part II examines support from immediate and extended family members, co-workers, support groups and other relevant individuals or groups. Part III explores educational, medical and therapy needs, specialized care and treatment and information about your child’s immunization history as well as vision and hearing needs. A Developmental Matrix is also included to collect information about each child’s achievement of typical developmental milestones such as demonstrating a social smile, reaching and grasping objects and sitting unsupported. The MODIFIED Survey is brief (50 items) and examines pregnancy information, support from family and friends and demographic information. This is for parents with children who lived for 60 days or less.

The Follow-up Survey requests information from parents who have completed the Full version in order to further examine educational, medical and related strengths and needs in a longitudinal manner. The project’s intention is to request completion of the Follow-up Survey each year your child is alive.

Through sharing information about your child, we hope to dispel commonly held misperceptions about this group (e.g., 10% survival rate after 12 months, limited outcomes from cardiac surgery, children’s inability to walk) and increase awareness of family needs, effective interventions and specialized care needs.

Registration Information

After you click on the button below, you will be taken to a more detailed overview of the Full, MODIFIED and Follow-up Surveys. You will also be asked to register by providing some information about yourself and your child. TRIS staff will then send you a password via email for access to the appropriate survey. If you forget your password, feel free to contact us at

We thank you for your interest and appreciate your time and efforts to provide us with this valuable information.

Take the Survey