Proximal myotonic myopathy Advocacy Hub | UniteRare

At a Glance

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Regulatory Watchboard

10 events

Jan 2026Improving Glycemic Control With Telemedicine and Smart Insulin Pens

University of Maryland, Baltimore — NA

TrialRECRUITING

Nov 2025CGM Use in Non-insulin Patients With DM2

Milwaukee VA Medical Center — NA

TrialNOT YET RECRUITING

Oct 2025Research on Effects of Drugs on Body Composition and Function With Imaging in Diabetes

Kristin Clemens

TrialNOT YET RECRUITING

Sep 2025An Open-Label Extension Study to Evaluate the Long-Term Safety and Efficacy of Once Daily Mexiletine PR in Patients With Myotonic Dystrophy Type 1 and Type 2 Who Have Completed MEX-DM-302 Study.

Lupin Ltd. — PHASE3

TrialENROLLING BY INVITATION

Jul 2025A Study to Investigate the Safety, Tolerability, and Efficacy of SAR446268, an Adeno-associated Viral Vector-mediated Gene Therapy in Participants Aged 10 to 50 Years of Age With Non-congenital Myotonic Dystrophy Type 1

Sanofi — PHASE1, PHASE2

TrialRECRUITING

Mar 2025Investigating Exercise in Myotonic Dystrophy Type 2 (DM2)

Massachusetts General Hospital — NA

TrialRECRUITING

Feb 2025The Efficacy and Safety of Once Daily Mexiletine PR in Patients With Myotonic Dystrophy Type 1 and Type 2

Lupin Ltd. — PHASE3

TrialRECRUITING

Jan 2025Postoperative Basal Bolus or Sliding Scale Insulin Regimen in DM2 and Its Effect on Surgical Site Infections.

Abraham Hulst, MD, PhD — NA

TrialRECRUITING

May 2023Signos DM2 Empowerment Study (SIGNOS-CGM-EMPOWER-201-2022)

Signos Inc — NA

TrialACTIVE NOT RECRUITING

Apr 2023Brain Structure and Clinical Endpoints in Myotonic Dystrophy Type 2

Wake Forest University Health Sciences

TrialRECRUITING

Data from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Financial Assistance

1 program

FINANCIAL LANDSCAPE SUMMARY

Total programs

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Glycopyrrolate

Hikma

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Clinical Trial Landscape

8 active trials

2Phase 3

1N/A

4Unknown

1PHASE1, PHASE2

8Total recruiting

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Recent News & Research

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Specialist Network

Top 5 by expertise

Benedikt Schoser, MD

Friedrich-Baur-Institute, Dep. of Neurology Klinikum der Universitaet Muenchen Munich, Germany

Score 322 trials

Chiara Marini-Bettolo, MD, PhD

Newcastle University

📍 Newcastle upon Tyne

Score 83 trials

Li Tai

Avidity Biosciences, Inc.

Score 01 trial

Ami K Mankodi, M.D

National Institute of Neurological Disorders and Stroke (NINDS)

📍 BALTIMORE, MD

Score 01 trial

Tanya Stevenson, EdD

Myotonic Dystrophy Foundation

Score 01 trial

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