Medical Resources

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.

Health Guidelines
Health Information
Information for Medical Professionals
Research Opportunities

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.

  • 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.
  • Social Determinants of Health-Related Quality of Life and Family Adaptation: If you are the parent (18 years of age or older) of a child (under the age of 19 years) who has Congenital Heart Disease, Down syndrome, or both Congenital Heart Disease and Down syndrome, we are inviting you to take part in a research project that we are conducting. The purpose of the study is to examine how social determinants of health (e.g. economic stability, education, health & health care, and where you live) influence child and caregiver health-related quality of life and family adaption in three groups of families: (1) families of children with Congenital Heart Disease, (2) families of children with Down syndrome and (3) families of children with Congenital Heart Disease and Down syndrome. Participation involves completing a survey that takes 30-40 minutes to complete. If you are interested in learning more about the study, you can email Dr. Marcia Van Riper (vanriper@email.unc.edu), who is a Professor at the University of North Carolina at Chapel Hill. Or you can click on the following link which includes additional details about the study as well as the actual survey –  https://www.surveymonkey.com/r/SKTDQW3
  • Evaluation of the Efficacy, Tolerability and Safety of Memantine Hydrochloride on Enhancing the Cognitive Abilities of Adolescents and Young Adults with Down Syndrome: A team of medical doctors and psychologists at the Case Western Reserve University, University Hospitals and the Cleveland Clinic is investigating the effects of memantine on individuals with Down syndrome between the ages of 15 and 32. To learn more about the study and how to participate, click Memantine Study flyer.
  • 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
  • HELP-DS: Healthy Sleep for Children with Down Syndrome (HELP-DS) is a research study to observe breathing, sleep and behavior in children with Ds before and after treatment for Sleep Disordered Breathing (SDB). Children with Down syndrome age 3-12.9 years who have not had their tonsils and and adenoid removed are eligible to participate. The study is being conducted by researchers at University Hospitals and Rainbow Babies and Children’s Hospital in Cleveland. Learn more here.