Abstract Details

Title Principles of Care for CIDP

Topic Autoimmune Neurology

Presentation(s) P3 - Poster Session 3 (11:30 AM-12:30 PM)

Poster/Presentation
Number 1-063

Objective To identify and characterize unmet needs and system-level gaps in the CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) care pathway across Europe, and to inform the development of patient-centered Principles of Care through structured collaboration between patient advocates, caregivers, and healthcare professionals.

Background

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare immune-mediated neuropathy characterized by diagnostic delays, treatment variability, and unequal access to multidisciplinary care across Europe. The Principles of Care (PoC) initiative, led by the GBS | CIDP Foundation International and EPODIN with support from Patvocates, is a 4-year long project, that aims to co-develop a patient-centered European framework to guide advocacy, clinical practice, and policy.

Design/Methods

By employing a mixed inductive-deductive qualitative design, as part of the Phase 1 of this project, two structured face-to-face workshops were conducted separately with patient advocates and caregivers (n=17) and healthcare professionals (n=16). Discussions were organized around the patient pathway (pre-diagnosis, diagnosis, treatment, supportive care/quality of life) and informed by the COM-B model, Patient Pathway Mapping, and Patient Experience Domains. Data were analyzed using a framework analysis approach supported by AI-assisted qualitative software.

Results Participants identified recurrent unmet needs across Europe, including: prolonged diagnostic delays and misdiagnosis; inequitable access to neuromuscular specialists; inconsistent treatment monitoring; limited psychosocial and rehabilitation integration; and insufficient shared decision-making. Visual pathway mapping revealed system-level breakpoints, particularly at referral transitions and long-term follow-up. Despite national variability, convergence emerged on core priorities for timely diagnosis, coordinated multidisciplinary care, structured monitoring, and quality-of-life assessment.

Conclusions This study demonstrates the feasibility and adds value of co-developing rare disease care standards through structured patient–clinician collaboration across Europe and be replicated in other regions of the world.

Authors/Disclosures
Richard Sperry PRESENTER	Mr. Sperry has received personal compensation for serving as an employee of GBS CIDP Foundation International. Mr. Sperry has received personal compensation in the range of $0-$499 for serving as a Consultant for Dianthus Therapeutics. The institution of Mr. Sperry has received personal compensation in the range of $500-$4,999 for serving as a Consultant for argenx. Mr. Sperry has received personal compensation in the range of $0-$499 for serving as a Survey Respondent with Rare Patient Voice.
Jean-Philippe PLANCON, Patient representative	Mr. PLANCON has nothing to disclose.
Luis Querol, MD, PhD (Hospital de la Santa Creu i Sant Pau)	Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CSL Behring. The institution of Dr. Querol has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for UCB. Dr. Querol has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for ArgenX. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Takeda. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Dianthus. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alnylam. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Annexon. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Avilar. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biocryst. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Immunovant. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Lundbeck. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for KPL. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Lycia. The institution of Dr. Querol has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Sanofi. Dr. Querol has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi. Dr. Querol has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novartis. Dr. Querol has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Roche. The institution of Dr. Querol has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for ArgenX. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Roche. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Merck. Dr. Querol has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Grifols. The institution of Dr. Querol has received research support from GBS-CIDP Foundation International. The institution of Dr. Querol has received research support from Grifols. The institution of Dr. Querol has received research support from ISCIII. The institution of Dr. Querol has received research support from CIBERER. The institution of Dr. Querol has received research support from UCB. The institution of Dr. Querol has received research support from ArgenX.
Nancy I. Di Salvo, Patient Advocate	Miss Di Salvo has nothing to disclose.
Lis Puga, PhD	Dr. Puga has received personal compensation for serving as an employee of Patvocates. The institution of Dr. Puga has received research support from GBS CIDP Foundation International.
Nirohshah Trialonis-Suthakharan, MSc	Mrs. Trialonis-Suthakharan has received personal compensation for serving as an employee of Patvocates. The institution of Mrs. Trialonis-Suthakharan has received research support from GBS CIDP Foundation International.

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