Abstract Details

Title Real-world Characteristics and Disease Management for a Virtual Longitudinal Cohort of Patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P10 - Poster Session 10 (5:00 PM-6:00 PM)

Poster/Presentation
Number 11-034

Objective Extract and annotate electronic health record (EHR) data accessed via Health Information Exchange for a CIDP patient cohort to assess real-world treatment patterns.

Background CIDP is an inflammatory neuropathy with heterogeneous presentation. EHR data were explored to describe comorbidities and disease management in real-world clinical practice.

Design/Methods Patients with CIDP who previously completed a quantitative survey and provided consent to participate in the Inspire CIDP Virtual Registry for collection of their medical records were included. CIDP-related data elements were extracted, processed, and analyzed. Descriptive statistics were generated.

Results Among patients included (N=50), median patient age was 63 years (IQR: 54-72). Median age at CIDP diagnosis was 57 years (IQR: 48-62); median time between first/last EHR was 126 months (IQR: 96-160). Most patients (96%) had comorbidities, most commonly hypertension (42%). Most patients (74%) had ≥1 CIDP-related medication other than immunoglobulin therapy (median number/patient: 2; IQR: 2-4) listed. Of patients with CIDP-related medication (excluding immunoglobulin therapy) listed in their EHR, 70% had corticosteroid use. Among patients with CIDP who had intravenous (IVIG) or subcutaneous (SCIG) immunoglobulin infusion details listed (56%), 27 received IVIG and 5 received SCIG; median numbers of IVIG or SCIG infusions (IQR) were 5 (2-34) and 2 (2-4), respectively. Median IVIG loading dose and maintenance doses (IQR) were 1.2 g/kg (1.0-2.0) and 1.4 g/kg (1.1-2.0), respectively.

Conclusions We demonstrated that it is feasible to extract EHR data to describe real-world characteristics and treatment patterns, including IVIG doses, of patients with CIDP. Most patients had ≥1 CIDP-related medication other than immunoglobulin therapy in their EHR; most reported IVIG or SCIG infusions, predominantly IVIG. Variations in practice and treatment patterns were noted, resulting in varied clinical data in EHRs, potentially impacting identification of patients with CIDP. We hope to expand this analysis to include CIDP-specific data extraction for diagnostic confirmation.

Authors/Disclosures
Deborah Kuk, MS PRESENTER	Ms. Kuk has received personal compensation for serving as an employee of Inspire.
Ade Ajibade, PhD (Takeda Pharmaceuticals)	Dr. Ajibade has received personal compensation for serving as an employee of Takeda. Dr. Ajibade has or had stock in Takeda.
Chafic Y. Karam, MD (University of Pennsylvania)	Dr. Karam has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Alnylam. Dr. Karam has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Sanofi. Dr. Karam has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Argenx. Dr. Karam has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Annexon. Dr. Karam has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Nuvig. Dr. Karam has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Applied therapeutics. Dr. Karam has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amgen. Dr. Karam has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Astra Zeneca. Dr. Karam has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Intellia. Dr. Karam has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Takeda. Dr. Karam has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Vertex.
Michelle Kirby, MS	Mrs. Kirby has stock in Takeda.
Megan m. Gower, PharmD	Dr. Gower has received personal compensation for serving as an employee of Takeda Pharmaceuticals USA, Inc.. Dr. Gower has stock in Takeda Pharmaceuticals USA, Inc..
Christopher Blair, MS	Mr. Blair has received personal compensation for serving as an employee of Takeda Pharmaceuticals. Mr. Blair has stock in Takeda Pharmaceuticals .
Faisal Riaz, MD	Dr. Riaz has received personal compensation for serving as an employee of Takeda Pharmaceuticals. Dr. Riaz has stock in Takeda.
Valmeek Kudesia, MD	Dr. Kudesia has received personal compensation for serving as an employee of Inspire Patient Communities.
Brian Chen, ScM	Mr. Chen has received personal compensation for serving as an employee of Inspire.
Jeffrey A. Allen, MD (University of Minnesota)	Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Argenx. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for csl behring. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Takeda. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Grifols. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alnylam. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Astra Zeneca. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Johnson and Johnson. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Alexion. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Annexon. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Immunovant. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amgen. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Dianthus. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for CSL Behring. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Annexon. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Takeda. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Dianthus. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for CSL behring. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Takeda. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Alnylam. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Alexion. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Johnson and Johnson.

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