UpdatedOctober 23, 2020
Once AllStripes collects your medical records, how do we use them for research? One important step is verifying the completeness and depth of the data from each participant.
At AllStripes, our mission is to unlock new treatments for people with rare diseases. One of the ways the AllStripes research team contributes to this mission is by asking important questions about the diagnosis, symptoms, and progression of rare conditions. We do this by analyzing de-identified information extracted from participants’ medical records, looking for new patterns or connections. But as with so many endeavors, the quality of our output (research findings) can only be as good as the quality of our input (medical data). So before we can begin asking new questions about the rare diseases we study, we must first ensure our starting data is as complete and deep as possible. We recently detailed this process in a research poster presented at the 2020 International Conference on Pharmacoepidemiology (ICPE), using the rare condition chronic inflammatory demyelinating polyneuropathy (CIDP) as a case study.
In the case of medical records, high-quality data would include as much of a participant’s medical record as possible, especially those documents related to care for the participant’s specific condition. Before we start research on a condition, we assess the completeness of each participant’s medical records using a variety of metrics, including the following:
For this case study in CIDP, we included participants who had consented to research and whose medical records contained documents from a majority of healthcare facilities listed by the participant. We also ensured that each participant’s medical record contained at least three neurology notes (because neurology is the most important specialty in CIDP care).
High-quality data from medical records should also contain information on key topics, including disease symptoms and diagnosis. To evaluate the depth of data available for this cohort, we confirmed the presence of important CIDP symptom information in participant medical records. We also investigated the time lag between when symptoms began and when patients were diagnosed with CIDP.
Medical records represent a rich source of data for investigating the symptoms and progression of rare conditions and their impact on patients and families. But in order to conduct impactful research on these questions, researchers must start with complete medical records of appropriate depth. The AllStripes team has developed a process to ensure that the data we use in our studies meet these crucial criteria, empowering us to test important hypotheses about a variety of rare conditions. These quality assurance procedures will help us continue our mission of partnering with patients and families to accelerate therapeutic development in rare disease.
If you’re interested in learning more about AllStripes research or in collaborating with us on future studies, please contact firstname.lastname@example.org. If you’d like to join AllStripes as a research participant, please visit allstripes.com or contact email@example.com.