A novel patient-centered real-world evidence study is helping shed new light on a rare condition known as chronic inflammatory demyelinating polyneuropathy (CIDP). The study, conducted by Inspire, the leading patient engagement and real-world evidence platform, aimed to gain a better understanding of US patient demographics, diagnostic journeys, healthcare resource utilization, and treatment patterns of CIDP patients using longitudinal patient data from the Inspire platform. The study is the first to use Inspire RWE Solutions, which link Inspire user-generated content with patient claims data to provide new insights.
CIDP is a rare autoimmune inflammatory disorder of the peripheral nervous system, and evidence about the real-world patient population is limited. To address this evidence gap, the study analyzed Inspire member data linked with medical and pharmacy claims through HIPAA-compliant tokenization. Inspire members with at least one diagnosis of CIDP from January 1, 2015 to November 30, 2021 were included.
The study identified 392 CIDP patients, with a median follow-up time of 49 months from the index date. The median age at diagnosis was 55, and 67% of patients were female. About 87% of the cohort had at least 100 claims from a median of 28 care sites across 36 providers, indicating substantial healthcare resource utilization.
The study also found that CIDP patients endure a long diagnostic journey to undergo appropriate treatment. The median time from the first diagnostic procedure to the index diagnosis was 7.3 months. Moreover, 35% of patients had a previous diagnosis of unspecified polyneuropathy, and 19% had a claim for electromyography or nerve conduction studies prior to their CIDP diagnosis. The study also found that the top five most common topics cohort members engaged with on Inspire include “skin,” “side effects,” “muscle,” “drugs,” and “nerve.”
The study provides valuable insights into CIDP patients’ experiences in the real world. It shows the importance of studying patient-centered real-world evidence to better understand rare diseases and improve patient outcomes. The study will be presented at the ISPOR 2023 conference in Boston, MA, and published in the June 2023 issue of Value in Health.