The Rubenstein Lab
The Rubenstein Lab is focused on improving the lives of individuals with intellectual and developmental disabilities, including Down syndrome and autism. Epidemiology, the science of public health, is the crucial tool that can help reach the ultimate goal of improving health and well-being for the population with intellectual and developmental disabilities. That work cannot be done without input and collaboration from the intellectual and developmental disability community, which motivates and drives our work to be impactful and translatable.
Diversity, Inclusion, and Equity
The Rubenstein Lab is committed to fostering a safe and inclusive environment. Creating anti-racist, anti-sexist, and pro-inclusion settings is a continual process and we strive to learn and grow. As the Lab grows, we will recruit, retain, and develop a diverse group of individuals to ensure a vibrant community.
BUSPH Diversity and Inclusion
Contact information:
Current Project Highlight:
Down Syndrome: Toward Optimal Trajectories and Health Equity using the Medicaid Analytic eXtract (DS-TO-THE-MAX)
Our research team at the Boston University School of Public Health aims to assess determinants of obstructive sleep apnea, dementia, and mortality and determine predicting factors for these conditions that affect the Down syndrome community in the US. We seek co-researchers to help us create materials to disseminate and to co-lead research projects using our large Medicaid data set.
See our new project page to learn more!
Students experiencing homelessness with disabilities
Children with disabilities and children experiencing homelessness in the United States are at increased risk for physical and mental health morbidity and poor adult outcomes. Children with disabilities are at greater risk of co-occurring health conditions throughout the life-course and report more pain and lower quality of life in adulthood compared to non-disabled peers. Children who experience homelessness are at greater risk of mental health issues (including suicidal ideation and attempt) and sexually transmitted infections compared to peers. Appropriate and accessible education is an essential tool for improving equity and ensuring optimal developmental trajectories for marginalized children. Our objective is to document the intersection of students experiencing homelessness and receiving public-school special educational services in the US.
Challenges of Caregiving: A survey for parents / caregivers of adults with Down syndrome
PI Rubenstein in partnership with LuMind IDSC
We know little about how to improve health outcomes for adults with Down syndrome. One area in which action can be taken is improving the direct support care for adults with Down syndrome. Due to the impairment of Down syndrome, many need direct care support, whether from professional staff or family and friends , throughout adulthood. Dedicated caretakers enable their loved one to thrive, but many caretakers report considerable stress and frustration due to the lack of institutional support. Research into improving caretaker experience and the downstream effect on the health of their loved one with Down syndrome is limited, especially in adults with Down syndrome. We have identified broad areas of high potential impact (communication with medical providers, caregiver physical and mental health, participation in research, socioeconomic disparity) and by surveying a large sample of caretakers, we can develop interventions targeted to specific community needs.
Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG Kids
CDC Grant: Werler / Rubenstein co-site PI
People born with heart conditions are living longer because of better care. However, little is known about the daily life of children born with heart conditions. Thus, the Metropolitan Atlanta Congenital Defects Program, the CDC, Boston University, and the Minnesota Department of Public Health are asking parents or caregivers of children born with a heart condition to complete a brief survey. This survey asks questions about child’s access to care and quality of life as well as needs and experiences of caregivers. Answers will help identify unmet needs of children born with heart conditions and their caregivers. This information may also help families who have children with heart conditions plan for the future.
We’re hiring!
Are you a graduate student at SPH interested in learning more? We are recruiting a PhD student in epidemiology and are looking for masters’ students to do research work. Reach out to erubens@bu.edu with any questions.