Defining a Clearer Path Forward in CIDP: Why Language Matters
Chronic inflammatory demyelinating polyneuropathy (CIDP) attacks the nerves, but its reach goes far beyond the body. It can permeate lives in ways that are deeply personal and often invisible. For many, it changes routines, relationships, and hope for the future. From impacts on daily function to emotional health, missing workplace goals to not being able to do tasks around the home, the ripple effects are significant. For people living with CIDP and those who care for them, unmet needs remain despite available therapies. As the field advances, clearer ways to define and discuss what’s really happening are also becoming more important: what it means to improve, how it feels to relapse, and to embrace living with this disease. In a field where every word can shape access and action, the definitions we use to define them must rise to the challenge.
What is CIDP? The Weight of a Rare Disease
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a chronic, autoimmune disease in which the body’s own immune system attacks the protective covering of nerves.1 This disrupts the critical communication between nerves and muscles, and can cause a slow, often relentless progression of weakness, numbness, tingling, and pain—especially in the arms and legs.2, 3
Common Symptoms Include
Sensory loss
The impact isn’t just physical. People living with CIDP often “negotiate” every day with what they can accomplish when dealing with symptoms that fluctuate week by week, or month by month. Some patients can lose their ability to walk unaided, work, or participate in family life, while others may face a rollercoaster of seeming stability interrupted by new or worsening symptoms.
Impact on Daily Life
CIPD presents unique challenges in daily life. A survey of 475 people living with CIPD in the US showed:
14%
Treatment can be a trial-and-error process, with side effects ranging from infections to fatigue, mood changes, or needing frequent travel to clinics. Over time, many patients and doctors adapt to a “new normal,” but that doesn’t necessarily mean their needs are met. There are therapies available—like immunoglobulins, corticosteroids, or plasma exchange—but not everyone responds well or at all.
1 in 3
70%
Meeting Unmet Needs: Why Sanofi is Stepping Up
Sanofi is investigating a different approach for people who may have run out of options—especially those who are “refractory,” meaning treatments no longer work for them, or never did. Through global clinical trials, we’re evaluating a new medicine that has the potential to improve response rates and reduce disease burden.
To further advance care, science, and access, we also need a stronger, shared foundation for how the disease is discussed and measured.
Why Words Matter in CIDP
In many fields of medicine, breakthroughs arrive with the help of “biomarkers”—lab tests, scans, or other physical clues that track disease and treatment. While certain tests such as neurofilament light (NfL) show early promise, more research is needed to validate and discover biomarkers that may help the management of CIDP.7
As a result, language carries unique weight in CIDP treatment management. Along with clinical tools like the Inflammatory Neuropathy Cause and Treatment (INCAT) disability score and grip strength testing, language helps to guide diagnosis and shape discussions about care. Combined, tools and language guide the way researchers build clinical trials and inform how physicians and patients discuss management options.
Toward Clarity: The Seed of a New, Shared Language
Today, people may describe and experience CIDP in different ways – even doctors in the same clinic may use different language. Recognizing the need for more standardized terminology in CIDP, the GBS | CIDP Foundation International’s Leadership Collaborative — a global group of expert advocates, clinicians, and researchers from around the world — followed a stepwise process to standardize terminology and bring in the patient voice. It began with global community workshops that brought together those living with CIDP and care partners to react to proposed terminology. From there, the Leadership Collaborative further honed and evolved the terminology with their lived experience. Their mission: to co-create a clearer, more practical set of definitions to guide care, research, and policy in CIDP.
The result is a set of defined working terms designed to unify the language of CIDP management of clinical care: immune neuropathy – evidence of disease activity (in-EDA), immune neuropathy – no evidence of disease activity level 1-2 (in-NEDA), response (minimal, partial, optimal), relapse, refractory, remission, residuals. The full proposed definitions, for clinicians and in simplified form, are currently available on the Foundation’s website, but it will take time for these definitions to be used in daily care and management of CIDP.
While it’s just starting to be discussed globally, having refined definitions of clinical care may be a step towards coming together to better understand CIDP. It signals that progress is possible when the voices of lived experience drive the conversation.
When we developed these definitions, it was essential to bring in the patient voice. Expert consensus helped establish clinical benchmarks, but equally important was asking what these terms mean from a patient’s perspective. For example, when discussing the concept of “refractory,” patients were clear that it should not be tied to a narrow set of circumstances. Defining it that way risks suggesting that once a treatment fails, there is no hope left. As one message came through strongly from the community—“refractory” to one intervention should not necessarily mean refractory to all interventions.
Dr. Jeffrey Allen
Associate Professor in the Department of Neurology at the University of Minnesota and Global Medical Advisory Board Chairman of the GBS | CIDP International Foundation
Advancing Meaningful Change
As Sanofi works to investigate a potential treatment option and advance clinical research for CIDP, we know true progress requires shared understanding, clear standards, and partnership with the community. With this research and the power of language, we aim to lay the foundation for smarter science and patient-centered care.
At Sanofi, we believe new medicines are most powerful when anchored in what matters to the CIDP community. When we learn from real experiences and use the same language as people living with CIDP and their care partners, we lay the foundation to build a clear understanding for science advances broader access and more hopeful futures. Clarity in our words is how we turn shared experience into shared progress.
Melissa Dupont
Global Public Affairs Lead, Neurology
Together, through innovation and collaboration, we can ensure that new words and ongoing research bring hope to people living with CIDP.
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References
- Querol L, et al. J Neurol. 2021;268(10):3706–16
- CIDP (2024) GBS/CIDP Foundation International. https://www.gbs-cidp.org/cidp/
- CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/cidp-chronic-inflammatory-demyelinating-polyneuropathy
- Allen J, et al. GBS CIDP Foundation International; https://www.gbs-cidp.org/2019/03/cidp-disease-burden-results-of-a-us-nationwide-patient-survey/
- Cocito D., et al. Eur J Neurol. 2010;17(2): 289–294
- Mari D., et al. Journal of Neurology, Neurosurgery & Psychiatry. 2025;96:38–46
- Biomarker and Subgroup Insights on Novel CIDP Therapy Riliprubart: Luis Querol, MD, PhD. Neurology Live. https://www.neurologylive.com/view/biomarker-subgroup-insights-novel-cidp-therapy-riliprubart-luis-querol