USOD’s Medical Outreach Program provides information about Down syndrome to families as well as pediatricians, obstetricians, nurses, social workers, genetic counselors, midwives and other healthcare providers seeking information. The primary goal of this program is to ensure that all parents and expectant parents with a possible or actual diagnosis of Down syndrome are given factual non-biased information with sensitivity and support, including information about USOD.
The USOD welcomes the opportunity to provide the medical community with accurate and relevant information about Down Syndrome. We can provide speakers at conferences, meetings and grand rounds presentations upon request. We want to help the medical community deliver the best care possible for their patients with Down Syndrome and their families.
- American Academy of Pediatrics
- Global Down Syndrome Foundation Medical Care For Adults with Down Syndrome 2020
- 2020 Medical Care Checklist for Adults with Down Syndrome
- Circle of Support 4/7/2021 – Auto Immune Disorders and Down syndrome; View program HERE
- Circle of Support 1/13/2021 – Alzheimer’s Disease 101; View program HERE with password MH^hKkR2
- Circle of Support 12/16/2020 – Mental Health Symptoms & Pharmaceutical Interventions for Loved ones with Down syndrome presented by Dr. Thomas Scheidemantel. View program HERE with password 03ckhRx!
- Circle of Support- Using Technology to Increase Independence – view video HERE with password 0*VyH*B$
- The Implications of Obstructive Sleep Apnea in People with Down Syndrome, presented by Dr. Joshua Greene – view video HERE
- Celiac Disease and Down Syndrome
- Mammography Guidelines for Women with Down Syndrome
- Alzheimer’s Disease in People with Down Syndrome
- Moyamoya Disease
- Dental Care Guidelines for Caregivers of Patients with Down Syndrome
Information for Medical Professionals
All research posted through the Up Side of Downs has undergone rigorous acceptance standards from their sponsoring institutions including but not limited to review by their IRB committee. Under FDA regulations, an IRB is an appropriately constituted group that has been formally designated to review and monitor biomedical research involving human subjects. In accordance with FDA regulations, an IRB has the authority to approve, require modifications In (to secure approval) or disapprove research.
- A Study on Parental Vaccine Hesitancy for Adolescents with Down syndrome: This study, being conducted by Akron Children’s Hospital & Kent State University aims to learn about the beliefs of parents of adolescents with Down syndrome have about vaccines. The 20-minute online survey consists of questionnaires about vaccines. Learn more HERE.
- Memory, Attention, & Mental Health in Down syndrome: The aim of this study, conducted online by the University of South Carolina, is to understand how important cognitive skills like memory & attention are related to mental health in individuals with Down syndrome. Learn more HERE.
- Parenting Children with Down syndrome: Dr. Gayle Faught and her team at the University of South Carolina Aiken are recruiting for a study examining how parental styles, emotions, and stress and coping affect children with Down syndrome. Child outcomes of interest include emotion regulation, self-control, and behavioral strengths and challenges. Parents of children with Down syndrome age 3 to 17 years, who’s child is able to effectively communicate are asked to complete online surveys that will take approximately 30 minutes of your time. For more information or to begin the surveys click HERE!
- PrO-PEAR – Preventing Obesity through Parent Empowerment and Activation of Routines: Do you have a child with Down syndrome aged 12-36 months? Is your child walking independently? Are you willing to participate in an interview and data collection from your home? If you and your child decide to take part in this study, you would be asked to participate in 2 interviews from your home. During these interviews, we will ask about your daily family routines and your ability to build a foundation of healthy habits for your child. Additionally, we will ask that your child wear a device on their wrist and/or their thigh that both measure activity and sleep behavior over a two-week period, and that you video-record four of your child’s meals. Finally, we will ask that you answer questions about your child’s nutrition, physical activity, and sleep. This information will be used to design an obesity prevention intervention specifically designed to meet the needs of families of young children with Down syndrome. For more information, please click here or contact Angela Caldwell, PhD, OTR/L at (412) 383 -7231 or ARL78@pitt.edu. Dr. Caldwell is an assistant professor within the Occupational Therapy Department at the University of Pittsburgh. Eligible families who take part will be compensated to thank them for their time.
- Family Factors and the Quality of Life in Children with Down Syndrome: The purpose of this study is to learn about how parents view family functioning and quality of life of children with Down syndrome. Learn more here.
- Neurodegeneration in Aging Down Syndrome: The University of Pittsburgh Medical Center is seeking adults at least 25 years of age with Down syndrome to participate in this research study. The study involves both cognitive testing and scans of the brain via MRI and PET. Learn more here-NiAD Research Study