Leveraging hindsight: A retrospective chart review how-to for genetic counselors

Abstract

Retrospective chart review can be a useful method for a research project in genetic counseling. These projects involve collecting data from routine clinical care, so they come with many benefits and drawbacks. Determining the research question and what data will need to be collected is the first step. Next, gathering the appropriate team to answer the question, discussing individual responsibilities and author order will facilitate the project. The research question must be able to be answered with data collected from routine clinical care, and there must be a sizable population to draw from. Regulatory approval must be obtained, though the regulatory bodies generally consider retrospective chart reviews exempt or expedited, depending on the data collected. There are many data collection tools available, though one must weigh the features and limitations of regulatory compliance as well. We have found it helpful to create a standard operating procedure with detailed notes on where to find the information in the patient's chart, how to interpret the information, and how to enter it into the data collection tool. Training abstractors and cross-checking data are helpful to ensure reproducibility. Once data collection is complete, a data quality check and data cleaning should be performed prior to data analysis. Finally, a manuscript should be prepared with the target journal and audience in mind during writing. Herein we provide lessons learned with a focus on applying these concepts to genetic research.