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!
We are actively recruiting co-researchers to join our team to study health outcomes for adults with Down syndrome.
Co-researchers will use their knowledge to engage with the research process, explore health questions of concern to the Down syndrome community, and provide feedback on study materials and findings. Our goal is to recruit individuals that have prior training and experience as a co-researcher.
If you know anyone who may be interested and able to participate with us please contact our project coordinator, Ashley Scott (ds2max@bu.edu).
Current Projects
Pregnancy rates, risk factors, and child and mother outcomes for women with intellectual and developmental disabilities in Wisconsin
Funding: National Institutes for Child Health and Human Development, 7R03HD099619-02; PI: Rubenstein
Over 2.2 million US adults have an intellectual or developmental disability, and experience disparities in economic standing, health, and education. In the past twenty years, more young people are carrying intellectual and developmental disability diagnoses (5.8% of children age 3-17, 35% increase since 1999). As this population enters the reproductive period, individuals, families, and researchers have raised concern about wellbeing during pregnancy and parenthood for women with intellectual and developmental disabilities and their children. We are leveraging the Big Data 4 Little Kids (BD4LK) project which links Wisconsin State Medicaid for all pregnancies from 2007-2016 (N≈260 000) to child birth records. Our aims are to (1) Estimate proportion of live births, and calculate age specific and total fertility rate in women with intellectual and developmental disabilities in our BD4LK sample, comparing results to mothers without intellectual and developmental disabilities; (2) Evaluate whether pregnant women with intellectual and developmental disabilities are at greater risk for maternal pregnancy or child related complications compared to pregnant women without intellectual and developmental disabilities and investigate potential pathways; (3) Characterize post-pregnancy outcomes for mothers with intellectual and developmental disabilities and their children including health outcomes and health service uptake and compare with outcomes for mothers without intellectual and developmental disabilities.
Students experiencing homelessness with disabilities in Massachusetts
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 Massachusetts.
Developing a research partnership between BUSPH and Special Olympics Massachusetts
BUSPH Practice Innovation Award; PI Rubenstein
People with intellectual and developmental disabilities, are at greater risk of obesity, cardiovascular disease, and premature mortality compared to peers. Despite the disparity, few public health tools to improve health in at-risk populations are utilized for people with intellectual and developmental disabilities. One impediment is a lack buy in for research, which can be time intensive, lack personal benefit, or be presented in a way that is difficult to understand. A co-research project is research carried out with members of the community, rather than for them. However, developing a co-researcher’s skills requires time, effort, and training. Our objective is to create a partnership between BUSPH and Special Olympics of Massachusetts (SOMA), a nonprofit organization that provides sports training and competition for children and adults with IDD to 1) develop an initial cohort of co-researchers with intellectual and developmental disabilities and 2) help SOMA develop their research infrastructure. With this partnership, BUSPH researchers and students can conduct more equitable research and SOMA can leverage their data to improve programs and health in their athletes.
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.
We’re hiring!
Postdoctoral Research Associate
Job Description
We are seeking a promising and motivated individual to be a postdoctoral research associate in the Department of Epidemiology at Boston University School of Public Health (BUSPH) under the mentorship of Drs. Eric Rubenstein and Marcia Pescador Jimenez. The research focuses on metrics of geographic contextual factors and healthcare access for Alzheimer’s disease and related dementia (ADRS), Down syndrome, and their co-occurrence. Compensation will be between $72,000-$77,000 depending on qualifications. Members of underrepresented racial or ethnic groups are highly encouraged to apply.
Send resume to erubens@bu.edu
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.
