To design a global patient registry (“Vitaccess Real CIDP”) to optimally quantify the impacts of disease and treatment on patients living with chronic inflammatory demyelinating polyneuropathy (CIDP) using electronic medical record (EMR) and patient-reported outcome (PRO) data.

CIDP is a rare, chronic, autoimmune disease characterized by progressive weakness and sensory impairment in the limbs. There is no robust source for CIDP research combining PROs and clinical data, including symptoms, daily activities and quality of life.

Patients with a clinical diagnosis of CIDP are recruited in the US and UK, with planned expansion to Germany in 2026. In all countries, recruitment can occur at clinical sites, with healthcare professionals contributing clinical data from patients’ medical records. In the US only, patients can also be recruited direct-to-patient or via their treating community neurologist; in both cases, clinical data are captured retrospectively via an EMR aggregator. Clinical data – including medical history, treatment history, and adverse events – are captured on a six-monthly basis.

For all patients, clinical data are linked with PRO data – including: Chronic Acquired Polyneuropathy Patient Reported Index, PROMIS Neuropathic Pain Quality 5a, PROMIS Pain Intensity 3a, NeuroQoL Fatigue Short Form, Work Productivity and Activity Impairment, EQ-5D-5L, Patient Health Questionnaire 9, Patient Global Impression of Change, Perceived Stress Fixed Form (US/UK) and Perceived Stress Scale – 10 (Germany). Patients contribute PRO data directly via the web-enabled registry platform on a six-monthly (all PROs) or three-monthly (EQ-5D-5L only) basis, in order to track symptoms and disease activity.

Direct-to-patient and community neurologist recruitment in the US and site recruitment in the US and UK will be initiated in Q4 2025.

By integrating digitally-captured clinical data and PROs, this novel registry aims to improve understanding of the symptoms and quality of life impact experienced by CIDP patients, to optimize future disease management.