New drug shows promise for Long-Term control of rare muscle disease
NCT ID NCT05979441
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study tests the long-term safety of a drug called efgartigimod PH20 SC in adults with active idiopathic inflammatory myopathy, a group of rare muscle diseases. Participants who completed a previous trial will receive the drug as a shot under the skin for up to 51 months. The goal is to see if the drug remains safe and helps control the disease over time.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
Active substance
efgartigimod PH20 SC (a biologic drug given as a shot under the skin)
What this could lead to
If it works, this could provide a long-term treatment option to control myositis, reducing symptoms and the need for steroids.
What could go wrong
This is an open-label extension study with no placebo group, so results may be less reliable. Long-term safety is still being evaluated, and the drug may not work for everyone.
Disclaimer
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This is a summary of
the original study
.
Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Locations
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ATTIKON University General Hospital - Neurology
Athens, 12462, Greece
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AZ Sint-Lucas - Campus Sint-Lucas - Neurology
Ghent, 9000, Belgium
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Aintree University Hospital - Liverpool University Hospitals NHS Foundation Trust
Liverpool, L9 7AL, United Kingdom
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Amsterdam UMC Research BV
Amsterdam, 1105 AZ, Netherlands
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Attune Health Research, Inc
Beverly Hills, California, 90039, United States
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Austin Neuromuscular Center (National Neuromuscular Research Institute, PLLC)
Austin, Texas, 78759, United States
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Aversi Clinic
Tbilisi, 0160, Georgia
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Azienda Ospedaliero Universitaria Consorziale Policlinico
Bari, 70124, Italy
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Azienda Ospedaliero Universitaria Pisana - Ospedale Santa Chiara - Rheumatology
Pisa, 56126, Italy
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Azienda sanitaria universitaria Friuli Centrale - ASUFC
Udine, 33100, Italy
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Centro Dermatologico Schejtman
San Miguel, B1663GKT, Argentina
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Centro Hospitalar do Porto - Hospital Santo Antonio
Porto, 4099-001, Portugal
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Centro Medico Privado de Reumatologia
San Miguel de Tucumán, 4000, Argentina
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Centrum Wsparcia Badan Klinicznych Pomorskiego Uniwersytetu Medycznego w Szczecinie (CWBK PUM) - Rheumatology
Szczecin, 71-252, Poland
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Charite Universitaetsmedizin Berlin - Campus Charite Mitte (CCM) - Rheumatology
Berlin, 10117, Germany
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China Medical University (CMU) - First Affiliated Hospital
Shenyang, 110001, China
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Chung Shan Medical University Hospital
Taichung, 402, Taiwan
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Clinica San Juan de Dios - sede Arequipa - Rheumatology
Arequipa, 4000, Peru
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Clinical Center of Serbia
Belgrade, 11000, Serbia
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Copenhagen University Hospital-Rigshospitalet University Hospital
Copenhagen, 2100, Denmark
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Cyprus Institute of Neurology and Genetics
Nicosia, 2371, Cyprus
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Emory Healthcare - Emory Clinic - Rheumatology
Atlanta, Georgia, 30322, United States
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Faculty Of Medicine, Khon Kaen University
Khon Kaen, 40002, Thailand
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First Affiliated Hospital (Henan Medical University - First Affiliated Hospital)-Zhengzhou University
Zhengzhou, 450052, China
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Fondazione Policlinico Universitario Agostino Gemelli - Neurology
Roma, 168, Italy
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Framingham Centro Medico
La Plata, B1902COS, Argentina
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Hospital Angeles Clinica Londres
Mexico City, 06700, Mexico
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Hospital Universitari i Politecnic La Fe de Valencia - Neurology
Valencia, 46026, Spain
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Hospital Universitario 12 de Octubre
Madrid, 28041, Spain
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Hospital de la Santa Creu i Sant Pau
Barcelona, 08041, Spain
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Huashan Hospital Affiliated to Fudan University
Shanghai, 200040, China
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Institute of Rheumatology
Belgrade, 11000, Serbia
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Institute of Science Tokyo Hospital
Tokyo, 113-8519, Japan
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Instituto Peruano Del Hueso Y La Articulacion Sac-Privado-Lima,Centro De Investigacion Iphar
Lima, 27, Peru
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Investigaciones Clinicas S.A.C.
Lima, 33, Peru
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Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) - Ospedale San Raffaele Hospital
Milan, 20132, Italy
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Japan Community Healthcare Organization Chukyo Hospital
Nagoya, 457-8510, Japan
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John Hopkins Medicine - Johns Hopkins Myositis Center
Baltimore, Maryland, 21224-2734, United States
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Juntendo University Hospital
Bunkyō City, 113-8431, Japan
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Karolinska Universitestssjukhus Solna
Solna, 17176, Sweden
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King Chulalongkorn Memorial Hospital - Neurology
Bangkok, 10330, Thailand
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Klinikum der Universitaet Ulm
Ulm, 89081, Germany
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LLC MediClub Georgia
Tbilisi, 0160, Georgia
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Mayo Clinic - Florida - Neurology
Jacksonville, Florida, 32224, United States
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Medical Centre Artmed
Plovdiv, 4002, Bulgaria
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Multiprofile hospital for active treatment Kaspela EOOD
Plovdiv, 4002, Bulgaria
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Nanfang Hospital, Southern Medical University
Guangzhou, Guangdong, 510515, China
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Nanjing University Medical School - Taikang Xianlin Drum Tower Hospital (Nanjing Drum Tower Hospital)
Nanjing, Jingsu, 210000, China
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National and Kapodistrian University of Athens - Eginition Hospital
Athens, 115 28, Greece
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National and Kapodistrian University of Athens - School of Health Sciences - Faculty of Medicine
Athens, 115 27, Greece
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Nerve And Muscle Center Of Texas
Houston, Texas, 77030, United States
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Neuromuscular Clinical and Research Center - Neurology
Phoenix, Arizona, 85028, United States
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New Hospitals
Tbilisi, 0162, Georgia
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Northern Care Allicance NHS Foundation Trust - Salford Royal - Rheumatology
Salford, M6 8HD, United Kingdom
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Northwell Health Physician Partners Rheumatology
Great Neck, New York, 11021, United States
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Northwestern Medicine - Northwestern Memorial Hospital
Chicago, Illinois, 60611, United States
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Oregon Health and Science University
Portland, Oregon, 97239, United States
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Ospedale Sant'Andrea Hospital
Roma, 00189, Italy
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Peking Union Medical College Hospital
Beijing, 100730, China
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Peking University Third Hospital
Beijing, 100191, China
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Phramongkutklao Hospital
Bangkok, 10400, Thailand
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Ramathibodi hospital
Bangkok, 10400, Thailand
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Reference Center Neuro-Muscular Diseases - CHU Paris Group Hospitalier La Pitie Salpetriere-Charles Foix
Paris, 75013, France
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Revmatologicky Ustav
Prague, 12850, Czechia
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Rheumazentrum Ruhrgebiet
Herne, 44649, Germany
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Santaros University Clinic
Vilnius, 08410, Lithuania
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Seoul National University Hospital
Seoul, 03080, South Korea
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Shanghai Jiao Tong University School of Medicine - Renji Hospital - Shanghai Institute of Digestive Disease (SIDD)
Shanghai, 200001, China
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Sichuan Provincial Academy of Medical Sciences and Sichuan Provincial People's Hospital
Chengdu, 610072, China
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Siriraj Hospital, Mahidol University of Internal medicine
Bangkok, 10700, Thailand
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Taichung Veterans General Hospital
Taichung, Taiwan
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The First Medical Center
Tbilisi, 0180, Georgia
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The Ohio State University
Columbus, Ohio, 43201, United States
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The Royal Free Hospital
London, NW3 2QG, United Kingdom
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The University of Tokyo Hospital
Bunkyō City, 113-8655, Japan
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Tirol Kliniken - A.o. Landeskrankenhaus Innsbruck - Neurology
Innsbruck, 6020, Austria
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UCI Health - ALS and Neuromuscular Center - Neurology
Orange, California, 92868, United States
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UCSF Health - ALS and Neurodegenerative Disease Center - Dermatology
San Francisco, California, 94143, United States
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UF Health - Rheumatology Medical Specialties Medical Plaza
Gainesville, Florida, 32610, United States
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USK-WAM Centralny Szpital Weteranow - Szpital Kniniczny ul. Zeromskiego 113 - Rheumatology
Lodz, 90-549, Poland
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Universitaetsklinikum Hamburg-Eppendorf
Hamburg, 20246, Germany
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Universitaetsklinikum Tuebingen (UKT)
Tübingen, 72076, Germany
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Universitair Ziekenhuis Leuven Gasthuisberg Campus
Leuven, 3000, Belgium
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Universitatsmedizin Mannheim GmbH
Mannheim, 68167, Germany
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University College Dublin (UCD) - St. Vincent's University Hospital (SVUH)
Dublin, D04 T6F4, Ireland
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University of North Carolina (UNC) School of Medicine
Chapel Hill, North Carolina, 27514, United States
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University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania, 15261, United States
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University of South Florida (USF) - Morsani Center (USF Health Carol and Frank Morsani Center for Advanced Healthcare)
Tampa, Florida, 33616, United States
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Wakayama Medical University Hospital
Wakayama, 641-8510, Japan
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Yale Cancer Center-Yale University School Of Medicine
New Haven, Connecticut, 06520, United States