A comprehensive resource designed to educate PCPs about the nuanced healthcare needs of women with Down syndrome and provide strategies to care for this patient population. Through patient case studies, this resource discusses gynecological care, period hygiene, reproductive health, menstruation management, menopause, osteoporosis, and more. PCPs can access this information through a traditional guidebook or eLearning course.
While prenatal screening and testing have expanded substantially over the past decade and provide access to more genetic information, expectant parents are more likely to describe the diagnosis experience as negative than positive. In addition, the conversations that take place during these experiences sometimes reflect unconscious bias against people with disabilities. Consequently, an interdisciplinary committee of experts, including people with disabilities, family members, disability organization leaders, healthcare and genetics professionals, and bioethicists, reviewed selected published and gray literature comparing the current state of the administration of prenatal testing to the ideal state.
Article from Scientific American that discusses if a diagnosis is not delivered with care, it can form an intense “flashbulb memory” that endures for years after the fact. The study showed that the intensity of these memories and the emotions associated with them depend on the doctor’s delivery, which either softens the impact or prolongs the pain.
The first-in-kind Global Guideline for medical care of adults with Down syndrome was peer reviewed, edited, and published in the Special Communication section of the print and online October 2020 issue of JAMA, the Journal of the American Medical Association.
Most recent American Academy of Pediatrics medical guidelines for Children with Down syndrome.
Tennessee Department of Health website with current information about Down syndrome for both medical providers and families. Information, reources, and Links are available along with advocacy groups across the state of Tennessee.
Original Interview With William I. Cohen, M.D. on the Significance of Down Syndrome Health Care Guidelines.
An Open Letter To Every OB/GYN On The Planet: How To Deliver A Down Syndrome Diagnosis, The Right Way.
2015 growth charts for children with Down syndrome in the United States are available for download. These charts can help healthcare providers monitor growth among children with Down syndrome and assess how well a child with Down syndrome is growing when compared to peers with Down syndrome.
The clinic provides comprehensive care and professional services to children and teens with Down syndrome. The clinic staff assists patients in finding therapeutic services and educational/behavioral support and providing a multidisciplinary approach to treatment.
Down Syndrome Diagnosis Network has a goal to ensure families who receive a Down syndrome diagnosis receive current information and support.
Sometimes it can seem impossible to find funding for a piece of adaptive equipment you know will vastly enrich and enhance your child or client’s life. Includes Online funding resource guides and a list of funds and foundations set up to help with funding for disabilities.
The Lettercase National Center for Prenatal and Postnatal Resources is part of the University of Kentucky’s Human Development Institute has free online learning modules for medical professionals on on screening, diagnostic tests and evidence-based practices when delivering a diagnosis of Down syndrome.
The IDD Toolkit website provides information for the primary care of adults with intellectual and developmental disabilities. The Toolkit offers health care providers best-practice tools and information regarding specific medical and mental and behavioral health concerns, including resources for patients and families.
Dennis McGuire, Ph.D., two-time recipient of Global’s Award of Excellence—in Medical Outreach and Psychology, shares three important takeaways regarding behavioral health in people with Down syndrome:
Joseph P. Kennedy, Jr. Foundation’s Understanding a Down Syndrome Diagnosis is an accurate, balanced, and up-to-date booklet for use when delivering a diagnosis of Down Syndrome.
National Down Syndrome Society Changing Lives: Down Syndrome & the Health Care Professional Myths & Truths About Down Syndrome
The National Center provides this clearinghouse of professionally recommended resources so that medical practitioners, expectant parents, and new parents have access to accurate, up-to-date, and balanced information about Down syndrome.
National Down Syndrome Society Changing Lives: Down Syndrome & the Health Care Professional Presenting a Diagnosis of Down Syndrome gives suggestions for medical profssionals when giving a diagnosis, both pre-natally and post-natally.
A list of resources for Health Care Professionals on a variety of topics related to Down syndrome.
To ensure inclusion, freedom, and respect for all, it's time to embrace People First Language.
Article written by Dr. Frank H. Boehm is professor and vice chair of the Department of Obstetrics and Gynecology at Vanderbilt University Medical Center for the America College of Obstretricians and Gynecologists about his grandson, Seth, who happens to have Down syndrome and is the "perfect child".
While the only way to accurately diagnose Down syndrome is through a chromosomal karyotype, certain physical features may be present.