Inclusion and participation of individuals with disability in eMERGE IV
eMERGE is a NIH-funded national network of 10 sites that enroll participants into genetic research. It has had 3 earlier cycles with tens of thousands of participants recruited in each; the current cycle (eMERGE IV) plans to enroll 25,000 individuals, with a particular focus on patients from underserved communities. The network has developed several participant surveys that allow the collection of data across the sites. This study focuses on participants who self-identified as people with disabilities as well as those who have chronic conditions such as kidney disease or type 1 diabetes. Issues to be explored include diverse representation in cohort, recruitment and retention, identify stated needs for participation, health behaviors, and expectations surrounding genetic testing for common diseases. Tasks required to fulfill study aims are literature review, quantitative data analyses skills, familiarity with e-health records and ICD codes, and drafting of manuscript; the projected outcome is a manuscript in a peer-review journal.
This is an UNPAID research project.
Faculty Advisor
- Professor: [Maya Sabatello](https://columbiamedicine.org/cpmg/team.php; https://www.mhe.cuimc.columbia.edu/ethics/our-team )
- Center/Lab: Medicine/CPMG and Division of Ethics
- Location: 168th street campus
- My research focuses on diversity and inclusion in precision medicine research, and issues of bias and representation in clinical documentation, focusing on people with disabilities and historically marginalized racial, ethnic and gender communities
Project Timeline
- Earliest starting date: 10/15/2022
- End date: 8/30/2022
- Number of hours per week of research expected during Fall 2022: ~10
Candidate requirements
- Skill sets:
- Fluency in R/Python, methods for NLP/text/sentiment analysis
- Experience in SQL for database query and/or data extraction from database
- Ability to work independently and in teams
- Responsiveness to emails and good communication skills
- Good writing skills
- Interest in people with disabilities is a plus
- Student eligibility:
freshman,sophomore,junior, senior, master’s - International students on F1 or J1 visa: eligible
- Academic Credit Possible: Yes