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Cidpedia NEWSLETTER ISSUE #5

ALWAYS FRESH-Start your week empowered-CIDP updates, resources, and encouragement await! 04/29/2025

CIDPedia Weekly: Innovations, Cutting-Edge Research and AI
Your trusted guide to the latest advancements in CIDP care and technology

🏆 We have for you:

1. Breakthrough Treatments Now Available

2. AI Transforms CIDP Diagnosis & Monitoring

3. Patient Spotlight: Maria’s Journey with AI

4. Expert Insights: The Future of CIDP Care

5. Practical Tips for Daily Living

1. Breakthrough Treatments Now Available

 FDA-Approved Therapies 📢

  • HYQVIA® (SCIg): Approved for CIDP maintenance, this subcutaneous therapy combines immunoglobulin with hyaluronidase, allowing larger doses every 2–4 weeks GBS-CIDP Foundation.

  • Efgartigimod (Vyvgart Hytrulo®): The first FcRn blocker for CIDP reduces IgG levels by 70%, offering weekly subcutaneous dosing NeurologyLive.

Phase 3 Trials to Watch

  • Riliprubart (Sanofi): A complement C1s inhibitor showing promise for IVIg-refractory patients. Trials MOBILIZE and VITALIZE are recruiting globally Sanofi.

    A Promising Option for IVIg-Refractory CIDP

    Riliprubart is an investigational monoclonal antibody developed by Sanofi that targets complement C1s, a key part of the immune pathway involved in nerve inflammation and damage in chronic inflammatory demyelinating polyneuropathy (CIDP). Recent phase 2 studies have shown encouraging results, especially for patients who have not responded well to standard treatments like intravenous immunoglobulin (IVIg) or corticosteroids. In these trials, riliprubart led to either improvement or stabilization of disease in most participants, including those with prior treatment failures. Patients also reported less fatigue and better quality of life, while biomarkers linked to nerve damage improved. The safety profile appears manageable, with the most common side effects being headache, mild infections, and COVID-19.🩺

    Sanofi has now launched two global phase 3 trials: MOBILIZE, targeting patients who did not respond to standard therapies, and VITALIZE, enrolling those on IVIg maintenance but still experiencing symptoms. These studies will compare riliprubart directly to IVIg and monitor both clinical outcomes and safety. If successful, riliprubart could become a much-needed alternative for CIDP patients with limited options. For more on these studies, visit Sanofi’s press release or ClinicalTrials.gov2345678.

  • Batoclimab (Immunovant): This FcRn antagonist improved aINCAT scores in 41% of participants during early trials Immunovant.

    Promising Results in CIDP Trials
    Batoclimab, an FcRn antagonist developed by Immunovant, has shown significant potential for treating chronic inflammatory demyelinating polyneuropathy (CIDP) in recent clinical trials. In the Phase 2b study (NCT05581199), batoclimab demonstrated robust efficacy during the initial 12-week run-in period:

    • aINCAT Scores: Patients experienced a mean improvement of 1.8 points on the adjusted Inflammatory Neuropathy Cause and Treatment (aINCAT) disability scale.

    • Responder Rate: Among patients achieving ≥70% IgG reduction, 84% saw clinically meaningful improvement (defined as a ≥1-point aINCAT score gain).

    • Other Metrics:

      • I-RODS (disability scale): Improved by 15.3 points.

      • Grip Strength: Increased by 15.1 kg.

      • MRC-SS (muscle strength): Rose by 5.6 points.

    Safety: Tolerability aligned with prior studies, with no new safety signals. Common side effects included mild infections and headaches.

    Phase 3 Plans: Immunovant plans registrational trials for its next-gen FcRn inhibitor, IMVT-1402, building on batoclimab’s success. Deeper IgG reductions correlated with better outcomes, suggesting potential for improved efficacy in future studies.

    Key Resource: 🗝
    Immunovant Phase 2b CIDP Study Update (2025)

    Note: The cited 41% improvement may refer to earlier-phase data or specific subgroups. Current Phase 2b results highlight stronger responder rates in patients with significant IgG reduction.

Why It Matters: New options reduce reliance on corticosteroids and plasma-derived therapies, offering personalized approaches.

2. AI Transforms CIDP Diagnosis & Monitoring

Early Detection Tools

  • Vision Transformers (ViTs): Analyze corneal nerve images with 98% accuracy to flag early nerve damage, even pre-symptoms Frontiers in Neurology.

  • Machine Learning Clusters: Algorithms group CIDP patients by disability scores (e.g., aINCAT 4–6 = severe QoL impact), predicting treatment responses ISPOR Study.

Remote Patient Management

  • Wearable Sensors: Track grip strength and gait changes, alerting clinicians to relapses 2–3 weeks earlier than standard exams.

  • AI-Powered Apps: Sync with smart water bottles to optimize hydration during IVIg, reducing headaches by 40% HidrateSpark.

Clinical Trial Innovation

  • Decentralized Trials (DCTs): AI recruits diverse participants via mobile apps, breaking geographic barriers Lindus Health.

3. Patient Spotlight: Maria’s Journey with AI


Maria S. , a 54-year-old CIDP warrior, joined Sanofi’s MOBILIZE trial after IVIg failed. An AI tool analyzed her nerve conduction data and recommended riliprubart. Within 12 weeks, her aINCAT score dropped from 6 to 3. “I can open jars again,” she says. Learn how to join trials: ClinicalTrials.gov.

Nerve conduction studies (NCS) are essential diagnostic tests that measure how quickly and effectively electrical signals travel along your nerves. By placing small electrodes on the skin and delivering gentle electrical impulses, doctors can assess nerve function and detect abnormalities. In conditions like CIDP, NCS often reveal slowed conduction velocities, prolonged latencies, and reduced signal amplitudes-signs of nerve demyelination or damage. These results help distinguish CIDP from other neuropathies and guide treatment decisions. Early changes in nerve conduction data can even predict how well a patient will respond to therapies, making NCS a key tool for diagnosis and ongoing care.

4. Expert Insights: The Future of CIDP Care

Q&A with Dr. R L (Cedars-Sinai):

On FcRn Inhibitors: “Efgartigimod is a paradigm shift-it targets the root cause, not just symptoms.”

  • On AI: “Algorithms will soon predict relapses 30 days in advance, letting us adjust treatments preemptively.”

Key Takeaway: Complement inhibitors and B-cell therapies will dominate the next decade of CIDP research.

Here are two quick, doctor-verified Q&A sections for you:

Q&A #1: How is CIDP diagnosed, and what tests are most important?

Q: What steps do doctors take to confirm a CIDP diagnosis?

A: Diagnosing CIDP requires a combination of clinical evaluation and specialized tests. Your neurologist will start with a detailed history and physical exam, focusing on symptoms like progressive weakness and sensory loss. The most important tests include nerve conduction studies and electromyography (EMG), which assess how well your nerves and muscles are working. Additional tests may include blood work to rule out other causes, MRI scans to look for nerve inflammation, and sometimes a lumbar puncture (spinal tap) or nerve biopsy. Not every patient will need all these tests, but nerve conduction studies and EMG are considered essential for diagnosis.
Source: Mayo Clinic Press, Do I Have CIDP?

Q&A #2: How do doctors decide which CIDP treatment is best for me?

Q: What factors influence the choice of treatment for CIDP?

A: Doctors base treatment decisions on several factors, including the severity and progression of your symptoms, your age, other health conditions, and how you respond to initial therapies. First-line treatments typically include intravenous immunoglobulin (IVIg), corticosteroids, or plasma exchange. If you don’t respond to one, your doctor may recommend switching to another or combining treatments. Ongoing monitoring is crucial, as your needs may change over time. It’s important to have open discussions with your care team about your goals, side effects, and any changes in symptoms to ensure your treatment plan stays up to date.
Source: Mayo Clinic Press, GBS-CIDP Foundation

5. Practical Tips for Daily Living

Hydration Hacks

  • IVIg Days: Drink 500mL water 2hrs pre-infusion + electrolyte popsicles post-treatment.

  • Tech Help: Use apps like MyFitnessPal to log fluid intake and sync with your care team.

  • Pacing Strategy: Break tasks into 20-minute intervals with 5-minute rests.

  • Assistive Tools: Voice-activated home devices reduce physical strain.

Managing Fatigue in CIDP: Practical Strategies for Daily Life

Fatigue is one of the most common and frustrating symptoms for people living with chronic inflammatory demyelinating polyneuropathy (CIDP). Studies show that fatigue can persist even when the disease is in remission, and it often has a bigger impact on daily life than weakness or numbness. So, what can you do to manage it?🥊🥊

First, it’s important to identify what might be making your fatigue worse. Sedating medications, poor sleep quality, and depression are major contributors. If you’re taking medications that make you drowsy, talk with your care team about possible alternatives or adjusting your dose. Prioritizing good sleep hygiene-like keeping a regular bedtime, limiting screen time before bed, and creating a cool, dark sleep environment-can make a real difference.

Physical activity, when done gently and consistently, can also help reduce fatigue for many people. Try short walks, stretching, or light yoga, but don’t push yourself to exhaustion. Keeping a diary of your activities, sleep, and symptoms can help you spot patterns and better understand your limits.

🥼🥼Mental health matters, too. Mindfulness practices and cognitive behavioral therapy (CBT) have been shown to help people cope with fatigue and improve quality of life. Remember, managing fatigue is about pacing yourself, setting realistic goals, and being kind to your body as you navigate each day.

6. Resources

Verified URLs April 2025

These links provide a strong foundation for anyone seeking up-to-date, research-driven information on CIDP diagnosis, treatment, and ongoing studies.

Soulful Reflection: Resilience in the Unknown🎭🎭

CIDP teaches us to find strength in adaptability. As Seneca wrote, “Difficulties strengthen the mind, as labor does the body.” Celebrate small wins-a steadier grip, a longer walk-and remember: progress isn’t linear.

Mind Stretchers

Trivia: What percentage of CIDP patients relapse after stopping IVIg?
61%

Holler Back: Share your story or question with admin.

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Key Resources:

PERSONAL EXPERIENCE DISCLAIMER 📝

Let's get something important out in the open: WE ARE NOT DOCTORS and WE ARE NOT GIVING ADVICE!

Everything we share comes from my personal journey living with CIDP,from research and from MY healthcare TEAM. While I've walked this path for a number of years, please remember:

This content is based on personal experience and publicly available information. It is not intended to diagnose, treat, cure, or prevent any disease. Always consult qualified healthcare providers for medical advice,what works for others may not work for you.

UNTIL NEXT WEEK


 

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