The MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities. Please see below for recent articles about medical and scientific research related to our community that our members may be interested in:
- December 2016 - Sibling Stress Survey
Researchers at Virginia Tech conducted a nationwide, online survey to examine stress and perceived support among adolescent siblings of individuals with autism spectrum disorder (ASD) and Down syndrome (DS). Siblings completed measures of perceived support from family and friends, their relationship with their brother or sister with ASD or DS, the level of challenging behaviors in the brother/sister, overall levels of personal stress, and stress due to specific parts of their life.
Importantly, there were no group differences on perceived support from family and friends or the sibling relationship. That is, siblings of individuals with ASD and siblings of individuals with DS both feel equally supported by friends and family and reported equally close relationships with their brother or sister. Additionally, the groups reported no significant differences on most sources of stress, including academics, social life, romantic life, family, environment, and personal health (scores for individual stressors were on a scale from 0-100).
However, siblings of individuals with Down syndrome reported significantly less overall stress and significantly less stress due to their brother/sister than did siblings of individuals with ASD. At first, it seemed that this difference might be a result of the higher level of brother/sister behavior problems reported by siblings of individuals with ASD, but further statistical analyses showed that group membership (e.g. Down syndrome vs. autism spectrum disorder) predicted total stress levels even when controlling for brother/sister behavior problems. It is important to note that the overall stress scale had possible scores of 0-40, meaning that the group averages indicated mild to moderate levels of stress.
Full results from this study are currently being written up for publication in academic journals. Please direct any questions to Dr. Carolyn Shivers, lead researcher (firstname.lastname@example.org).
- January 2017 - “A predictive model for obstructive sleep apnea and Down syndrome," American Journal of Medical Genetics Part A. Published by the research team at Mass General Hospital's Down Syndrome Program. Summary: This paper identifies a novel assessment that may rule out the presence of moderate and severe obstructive sleep apnea in patients with Down syndrome.
- January 2019 - "MGHfC study details development of functional skills in persons with Down syndrome"
"People with Down syndrome never stop learning!" - Congratulations to Brian Skotko of MassGeneral Hospital Down Syndrome Program and his partners on this groundbreaking new study that shed light on what's possible for our loved ones with Down syndrome throughout the lifespan.
When expectant parents learn their child will be born with Down syndrome, they invariably have questions about what this diagnosis will mean for their son or daughter and for the rest of their family. When will their child be able to walk, to speak clearly, to care for most basic needs? Will he or she be able to hold a job, to live or travel independently? A new study from investigators at MassGeneral Hospital for Children and colleagues in the Netherlands is providing answers to some of those questions.
“More and more parents are opting for prenatal testing during their pregnancies, and if they learn about a diagnosis of Down syndrome, they want to know real-life answers to such questions,” says Brian Skotko, the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital (MGH), director of the MGH Down Syndrome Program, and senior author of the study published online in American Journal of Medical Genetics Part A. “Contrary to some public beliefs, people with Down syndrome never stop learning, and functional skills can still be attained and improved well into adulthood."