Copy Link
Boston, MA, USA and London, UK – 8 April 2026, Vitaccess, a leader in generating science-driven real-world evidence, announces the launch of the Vitaccess Real CIDP Registry, a first-of-its-kind patient-centered registry in chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), designed to generate longitudinal insights into CIDP. The announcement coincides with the enrolment of the first patient into the registry, marking a key milestone in building a deeper understanding of the condition.
CIDP is a rare autoimmune disorder in which the immune system attacks the myelin sheath surrounding peripheral nerves, leading to progressive weakness, sensory loss, and impaired mobility. Despite advances in treatment, there remains a significant gap between clinical trial evidence, which can be narrowly focused, and the lived experiences of patients and caregivers managing CIDP over time. To date, there has been no sustained, patient-centered registry designed to capture CIDP outcomes in real-world settings.
The registry is guided by a leading Scientific Advisory Board, which includes Professor Yusuf Rajabally (University Hospitals Birmingham), Professor Ali Habib (University of California, Irvine), and Professor Mark Stettner (University of Essen), alongside patient advocacy representatives Nancy Di Salvo (GBS | CIDP Foundation) and Rich Collins (Inflammatory Neuropathies UK). It will capture longitudinal observational data on disease progression, treatment patterns, and patient outcomes, integrating patient-reported outcomes (PROs), clinician-reported data, and medical record information within a single, secure research platform.
“There is a clear need to better understand how CIDP affects patients and caregivers over time, beyond what we see in controlled clinical trials,” said Mark Larkin, PhD, CEO and Founder of Vitaccess. “What makes this registry different is Vitaccess’s approach and the successful blueprint we have taken forward from the VRMG Registry. We don’t aggregate existing datasets or capture a single point in time, instead we build sustained relationships with patients, clinicians, and advocacy groups to generate evidence prospectively over time. We believe that this kind of longitudinal, patient-generated evidence is essential to improving decision-making and, ultimately, outcomes for people living with CIDP.”
By combining data sources, the registry is designed to generate robust, decision-grade real-world evidence that reflects how patients and caregivers experience and manage CIDP in real-world settings. This valuable data can help inform clinical trial design, treatment guidelines, and care pathway optimization, ultimately improving outcomes for patients and caregivers navigating the complexity of CIDP.
CIDP presents significant challenges for patients, clinicians, and researchers, as the disease course is highly variable, diagnosis can be delayed, and patients often experience a prolonged and complex journey before receiving appropriate treatment.
While clinical trials provide important insights into treatment efficacy, they are not always able to capture:
- Long-term disease progression
- Variability in treatment response
- The day-to-day impact on patients’ quality of life
- The broader burden on caregivers and healthcare systems.
Real-world evidence is increasingly required by regulators, payers, and health technology assessment bodies to complement clinical trial data and inform decision-making across the product lifecycle.
About Vitaccess
Vitaccess is a UK-based leader in real-world evidence generation, closing the insight gap for biopharma companies worldwide by putting patient voices at the center of research that matters. Through scientifically rigorous, expert-led patient research, we deliver the full spectrum of evidence generation, from longitudinal registries through to qualitative concept elicitation. Vitaccess can integrate patient-reported outcomes, clinical data, qualitative research, and preference studies, providing nuanced real-world evidence that supports global payer and regulatory decision-making, across a range of therapeutic areas, including rare disease, neurology, cardiovascular and metabolic, oncology, respiratory, and haematology.
To learn more, visit our website: https://vitaccess.com/
