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Race to stop ALS before it starts in High-Risk families

NCT ID NCT04856982

Summary

This study is testing whether a drug called tofersen can delay or prevent the onset of ALS in adults who carry a specific genetic mutation (SOD1) and show early biological signs of the disease but do not yet have any symptoms. The trial will compare the drug to a placebo in about 158 participants to see if starting treatment before symptoms appear is more effective. The main goal is to see if the drug can prevent or significantly delay the emergence of the debilitating symptoms of ALS.

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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Contacts and locations

Locations

  • Austin Neuromuscular Center

    Austin, Texas, 78756, United States

  • Azienda Ospedaliero-Universitaria Città della Salute e della Scienza di Torino

    Torino, 10124, Italy

  • California Pacific Medical Center Research Institute

    San Francisco, California, 94107, United States

  • Centrum Medyczne NeuroProtect

    Warsaw, 01-684, Poland

  • Columbia University Medical center

    New York, New York, 10032, United States

  • Genge Partners

    Montreal, Quebec, H4A 3T2, Canada

  • Groupe Hospitalier Pitie-Salpetriere

    Paris, Paris, 75651, France

  • Hanyang University Seoul Hospital

    Seoul, 04763, South Korea

  • Holy Cross Hospital

    Fort Lauderdale, Florida, 33308, United States

  • HonorHealth Neurology

    Scottsdale, Arizona, 85258, United States

  • Hospital Sao Paulo

    São Paulo, São Paulo, 04037-002, Brazil

  • Hospital Universitari i Politecnic La Fe

    Valencia, 46026, Spain

  • Johns Hopkins Hospital

    Baltimore, Maryland, 21287, United States

  • Kagoshima University Hospital

    Kagoshima, Kagoshima-ken, 890-8520, Japan

  • Macquarie University Hospital

    Macquarie Park, New South Wales, 2109, Australia

  • Massachusetts General Hospital, MA

    Charlestown, Massachusetts, 02129, United States

  • Medizinische Hochschule Hannover

    Hanover, Lower Saxony, 30625, Germany

  • NeuroProtect Sp. z o.o.

    Warsaw, Masovian Voivodeship, 01-684, Poland

  • Norrlands Universitetssjukhus

    Umeå, 90185, Sweden

  • Northwestern Medicine

    Chicago, Illinois, 60611, United States

  • PSEG Centro de Pesquisa Clinica

    São Paulo, 04038-002, Brazil

  • Sunnybrook Health Sciences Centre

    Toronto, Ontario, M4N 3M5, Canada

  • The Emory Clinic

    Atlanta, Georgia, 30322-4200, United States

  • UZ Leuven

    Leuven, 3000, Belgium

  • Universitaetsklinikum Ulm

    Ulm, Baden-Wurttemberg, 89081, Germany

  • University Hospital of Umea

    Umeå, Västerbotten County, 90185, Sweden

  • University of Calgary

    Calgary, Alberta, T2N4Z6, Canada

  • University of California San Diego Medical Center

    La Jolla, California, 92093-0949, United States

  • University of Miami School of Medicine

    Miami, Florida, 33136, United States

  • University of Sheffield

    Sheffield, South Yorkshire, S10 2RX, United Kingdom

  • University of Tokyo Hospital

    Bunkyō City, Tokyo-To, 113-8655, Japan

  • Washington University School of Medicine

    St Louis, Missouri, 63110, United States

Conditions

Explore the condition pages connected to this study.