In A Nutshell
Contribute to data standardization and release, quality assurance of clinical datasets, liaise with external researchers to ensure their datasets are returned to the foundation, collaborate with Informatics on platform development for new clinical measures.
Responsibilities
- Contribute to data quality/cleaning and release efforts for all SFARI cohorts and other clinical data sets.
- Contribute to data standardization to be applied across cohorts and datasets hosted by SFARI and test workflows for clinical issues/accuracy.
- Assist with developing and testing relevant data collection and review platforms.
- Advise Informatics team on the management and release of clinical data and the implementation of data standardization.
- Assist the Informatics team in gathering requirements for software development related to data collection and release.
- Update SFARI Base documentation (welcome packets, data dictionaries, release notes, etc.).
- Collaborate with SPARK and Simons Searchlight teams at Boston Children’s Hospital as well as external subject matter experts to identify relevant measures for use in cohorts and plan order of release based on research priorities and other needs.
- Assist with providing phenotype data from clinical cohorts.
- Prepare data for internal and external inquiries, publications, posters, presentations, and community reports.
- Collaborate with SFARI Senior Scientist and Communications team to develop effective methods to disseminate reports and other relevant information to participant and research communities (e.g., webinars, articles, social media, etc.).
- Aid other data-related projects at the Simons Foundation as needed (e.g., answering questions from internal staff or external researchers).
Skillset
- Ph.D./Ed.D and/or Master’s degree and 2 or more years experience in related research or clinical field using the above skills preferred.
- Experience with human participants research preferred.
- Experience with data entry, scoring and/or summarizing surveys and common psychological measures (e.g., IQ tests, ASD instruments such as ADOS, ADI, SCQ etc., a plus) and familiarity with interpretation of measures and scores.
- Familiarity with ASD and other neurodevelopmental diagnoses.
- Proficiency with basic data “cleaning” and preparing basic descriptive summary statistics with social science data.
- Proficiency with manipulation of data files (csv/xls) and using functions and formulas in Excel.
- Experience aggregating EHR, clinical EEG and/or MRI data or digital data preferred.
- Experience querying using SQL and/or use of statistical packages such as SPSS, STATA or R.
- Experience with preparing graphics (such as histograms) and figures for publication, conference posters, and presentations.