how to deliver a diagnosis
At DSDN, our goal is to provide medical providers the tools and resources needed to discuss Down syndrome in a way that is supportive and educational. Whether you are delivering a prenatal diagnosis, discussing possible ultrasound markers or informing parents that their newborn is showing signs of Trisomy 21, we want to help ensure your patient leaves the conversation feeling informed and respected.
Additionally, we encourage all health systems to make follow up surveys a routine part of a Down syndrome diagnosis. Please contact us for assistance in implementing your own feedback program today.
a diagnosis can go well
We asked hundreds of parents in our groups about their diagnosis experience and what stood out to them from the conversation with their provider.
This video includes the words from practitioners to parents at the time of diagnosis as told by grateful parents.
how DSDN supports Physicians
"This weekend will change the way I counsel patients in the future." While exhibiting at ACOG District II in 2018, DSDN's Medical Outreach team met Dr. Mark Rosing an Obstetrics and Gynecology Chair with over 20 years of experience currently practicing in the Bronx.. Watch the video as we discuss how learning about DSDN made a profound impact on the way that he will counsel patients with a new diagnosis in the future.
sharing the news
"We sought to provide evidence-based recommendations to physicians on how to best deliver a prenatal diagnosis of DS to expectant parents. Our study design consisted of searching Medline and PsychInfo from 1960 to 2008, as well as Web sites from academic organizations and other nonprofit or private organizations, using the terms ‘‘Down syndrome,’’ ‘‘Trisomy 21,’’ ‘‘mongolism,’’ ‘‘prenatal diagnosis,’’ ‘‘postnatal care,’’ and ‘‘delivery of health care.’’ Our results showed that a health care professional knowledgeable about DS with specific training in the delivery of sensitive diagnoses should be part of the first conversation."
"Many parents of children with Down syndrome (DS) have expressed dissatisfaction with how they learned about their child's diagnosis. DS remains the most common chromosomal condition, occurring in 1 of every 733 births, with the majority of children still diagnosed postnatally.
Our goal was to review systematically all available evidence regarding how physicians should approach the conversation in which they explain DS for the first time to new parents."
Below is the most up to date evidence available to guide your practice in delivering a diagnosis or screen result.
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prenatal screening information for conditions
prenatal testing and information for Down syndrome
Helping your patients understand testing before it is done, can be an effective way to understand your patient's values as well as educate them on potential genetic conditions. Understanding Prenatal Screening and Testing for Chromosome Conditions, created by Lettercase, is specifically for patients who are being offered testing and want more information about the different kinds of testing and the different conditions for which they are being tested.
National Down Syndrome Congress and Global Down Syndrome Foundation have teamed up to publish the second edition of the groundbreaking Prenatal Testing & Information About Down syndrome pamphlet, available in English, Spanish and Icelandic. The second edition, created from the first national survey of pregnant women and medical professionals, is easily accessible electronically, or in print at no cost.
resources for parents
DSDN offers online groups for parents to connect with other parents at similar stages of the diagnosis journey. The support team hosts private, moderated groups for new and expectant parents, as well as topical subgroups. Whether seeking out local or online connections, DSDN is ready to meet them where they are and provide the resources parents need from pre-decision and beyond.