Improving Access to Medical Literature for Parents and Families

Our new Clinical Literature Resource improves access for Parents who often encounter challenges accessing the relevant medical literature that allows them to fully participate as informed advocates for their child. The Foundation has long advocated with coalition partners for Free Public Access to federally-funded peer-reviewed literature which is usually restricted to a pay-per-article system that can make it cost-prohibitive for parents to review all the relevant literature about to their child’s condition.

We want to assist parents with this challenge.  We will regularly gather the relevant literature and publish a central resource of articles as they are made publicly available so that you can easily download and read at no cost.  To stay on top of the most recent developments in Trisomy 18 clinical studies, parents can count on the Foundation to monitor all the scientific and clinical literature related to Trisomy 18 and identify the key articles that are relevant to your pregnancies and your child’s care.  

Clinical studies from the medical literature often detail the natural outcome of the condition or, in contrast, they examine the outcome of possible surgical interventions and surgical repairs of specific malformations or birth defects that infants with Trisomy 18 are commonly born with for a defined sample of patients.   Often these studies are attempting to evaluate whether a specific intervention or surgery improves the quality or duration of the child’s life beyond the first year.  Parents facing these same questions for their unique child can benefit from reviewing the literature on the surgical outcomes for other children experiencing the same interventions.

We will continue to update this Clinical Literature Resource for Parents with relevant literature to assist you in being informed advocates for your child.