An initiative called the TRIO comprehensive integrated patient data repository (TRIO CIPDR) in the United States is capturing valuable data on contemporary patients diagnosed with pulmonary arterial hypertension (PAH) who are receiving therapies that have been approved by the US Food and Drug Administration (FDA).
“Under the guidance of an independent, expert steering committee, the repository protocol took a new approach compared with that generally used by current and previous PAH registries―by combining prescribing and dispensing data for PAH-specific medications with clinical data from electronic medical records,” Farber and colleagues explained in Pulmonary Circulation.
“There was a stringent process for validating and confirming the Health Insurance Portability and Accountability Act–compliant data in TRIO CIPDR, ensuring data quality and opening opportunities for using the data to support interactions with regulatory health authorities.”
The data set includes hemodynamic and clinical information, as well as dispensing records of prescribed PAH medications, all provided by the participating tertiary care centers.
Read more about PAH epidemiology
The analysis of the study cohort revealed that most patients had a low (36%) or intermediate (65%) 1-year mortality risk, and were on monotherapy (40%) or dual therapy (43%).
Most (75%) patients were female, 67% were White, and the median age at PAH diagnosis was 53 years (with a median time from diagnosis to enrollment of 5 years).
Moreover, 37% of patients were classified as obese. Comorbidity profiles were consistent with expectations for a PAH population, although the prevalence of atrial fibrillation (34%) was higher than anticipated. Idiopathic PAH accounted for 38% of cases, and 30% were classified as connective tissue disease-related PAH.
TRIO CIPDR has enrolled 946 adults with PAH from 9 leading US specialist tertiary care centers, with data collected from January 2019 to December 2020.
The longitudinal data collected through TRIO CIPDR will play a crucial role in tracking the treatment journey of these patients. By monitoring their clinical characteristics, real-world prescription usage, and long-term outcomes, this repository will offer continuous insights into the management of PAH and the effectiveness of different treatment strategies.
Farber HW, Chakinala MM, Cho M, et al. Characteristics of patients with pulmonary arterial hypertension from an innovative, comprehensive real-world patient data repository. Pulm Circ. Published online July 6, 2023. doi:10.1002/pul2.12258