Novel Key Terms For Managing CIDP Published in Neurology® Journal
CONSHOHOCKEN, Pa., June 22, 2026 (GLOBE NEWSWIRE) -- The GBS|CIDP Foundation International is thrilled to announce the publication of shared key terms to describe the management of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in the esteemed Neurology®. This pioneering language will align common descriptors among patients and medical professionals to ensure a shared understanding of the patient experience throughout their CIDP care journey. According to research published on June 16, 2026, in Neurology®, the medical journal of the American Academy of Neurology, the whitepaper titled, “Consensus Definitions of Disease Activity and Clinical Outcomes in Patients With Chronic Inflammatory Demyelinating Polyradiculoneuropathy” can be found here: https://www.neurology.org/doi/10.1212/WNL.0000000000218159
Until now, key terms used to describe CIDP management were not uniformly defined. What it meant to “respond to treatment,” “relapse,” or reach “remission” had often been left to individual physicians, leading to patient confusion and differing clinical trial approaches. To streamline the management of CIDP, the Foundation set out to standardize these terms through The Leadership Collaborative, an initiative designed to address emerging challenges that disrupt the treatment, care, or innovation in GBS, CIDP, and MMN.
Dr. Jeffrey Allen, Associate Professor of Neurology at the University of Minnesota and Chair of the Foundations’ Global Medical Advisory Board shared, “Progress is often slowed when there is a disconnect between how patients describe their symptoms and how clinicians interpret them. By establishing a shared language, we hope to improve communication between patients and healthcare providers, leading to better disease management and improved preparedness for clinical research and trials. With a common set of terms, patients and their doctors can work together more effectively to improve the overall CIDP care experience.”
The Leadership Collaborative encompasses members of the patient community and global key opinion leaders who defined these key CIDP terms. The process started with a discussion during an international meeting. Then, the Foundation hosted a patient workshop over two-days where patients discussed the terms and provided feedback and information on what key opinion leaders should consider when defining them. Finally, a group of global CIDP experts met to define the terms using a modified Delphi consensus model.
CIDP is characterized by progressive weakness and sensory loss in the patient’s arms and legs. CIDP usually develops over a course of 6-to-10 weeks and occurs on both sides of the body and can lead to wheelchair confinement if left untreated.
About GBS|CIDP Foundation International
GBS|CIDP Foundation International is the preeminent global nonprofit supporting individuals and their families affected by GBS, CIDP, MMN and related conditions through a commitment to support, education, research and advocacy. The Foundation has more than 40,000 members throughout 47 countries and has a 19-member Global Medical Advisory Board comprised of the world’s leading physicians in peripheral neuropathy research and patient care. GBS|CIDP Foundation International has been closely aligned with the University of Pennsylvania Medical Center since its inception, is a member of the National Organization for Rare Disorders (NORD), and maintains a four-star rating on Charity Navigator.
CONTACT INFORMATION:
Darlene Blevins
Ph: 610-667-0131, ext. 30
Email: Darlene.Blevins@GBS-CIDP.org
Neurology Contact:
Renee Tessman: rtessman@aan.com
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