The American Society of Hematology (ASH) recently accepted two of our abstracts for the upcoming 63rd ASH Annual Meeting, which will be held December 11-14, 2021. Both abstracts explore data from the PicnicHealth Hemophilia Cohort and are published in partnership with Roche-Genentech and key opinion leaders in the hemophilia space, Mark Skinner (McMaster University, ON, Canada), Michelle Witkop (National Hemophilia Foundation, NY, NY) and Amy Shapiro (Indiana Hemophilia and Thrombosis Center, IN). The first abstract describes PicnicHealth’s novel methodology for building patient-centric, real-world datasets and has been accepted for an oral presentation. The second abstract builds on the methodology abstract to characterize patients with mild to moderate hemophilia A - a group historically underrepresented in scientific literature.
Abstract #594: A Novel Methodology for Building Longitudinal, Patient-Centric Real World Datasets in Hemophilia A
This abstract reviews our innovative patient-centered approach to building longitudinal datasets, which avoids data gaps common in other datasets. For example, claims data is confined to billing codes, and registries are incredibly resource intensive to stand up. The study points to the high-quality nature of PicnicHealth’s data abstraction, the volume of medical record data collected and PicnicHealth’s ability to directly engage patients to go even beyond what’s available in the record. A measure of high-quality abstraction, PicnicHealth’s inter-abstractor agreement scores are consistently above 95% for any data type. In terms of volume of data, a median of 50 clinical documents from 11 years were processed for each patient in this cohort. Finally, this dataset is being supplemented with patient-reported outcomes (PROs), which patients respond to biweekly and share information about their bleeds. As of June 2021, the average PRO response rate was 90.3%. These results highlight not only the quality of the PicnicHealth data in hemophilia A, but also confirm the validity of our novel approach to building real-world datasets.
Abstract #2107: Characterizing Mild and Moderate Hemophilia A Patients in the Real World: A Patient-Centric Approach
This abstract applies our overall approach to characterize patients with mild to moderate Hemophilia A. Because these patients are a historically underrepresented group in scientific literature, it is especially important to study mild to moderate hemophilia A in the real-world context to truly understand the patient population, disease burden and healthcare resource utilization. The study’s results highlight a few things: (1) the data suggests that males are diagnosed at a younger age, on average, than females and (2) patients ages 45 - 64 have more clinical (including inpatient and outpatient) visits than any other age group: 0-19, 20 - 44 and 65+. The study draws on these findings and others to conclude that the patients in the PicnicHealth cohort’s characteristics are generally comparable with the Center of Disease Control’s (CDC) data around age, BMI and ethnicity. This again confirms the strength of the PicnicHealth approach in building representative, longitudinal real-world datasets.
All ASH abstracts are available online at https://ash.confex.com/ash/2021/webprogram/start.html
About PicnicHealth’s Hemophilia Cohort. PicnicHealth has built a longitudinal real-world hemophilia data including hemophilia A and B patients with varying levels of disease severity (e.g., mild, moderate and severe). Novel data abstraction models were developed to uncover hard to obtain bleed events (e.g., spontaneous and traumatic), bleed location, and annual bleed rates from narrative text. Additionally, the dataset allows researchers to connect bleed events to patient symptoms, comorbidities, and treatments to help better characterize the complete patient experience. The cohort is available for license by life sciences partners and is currently helping researchers understand burden of disease in hemophilia B to support payer conversations for gene therapies under development; helping manufacturers demonstrate the feasibility of value-based agreements in support of upcoming gene therapy product launches; and being used to construct synthetic comparator arms for ongoing clinical studies.
Contact a team member today to learn more about our real-world data research cohorts.
