Race against time: new pill tested to halt rare brain disease

NCT ID NCT04221451

Summary

This study tested whether a daily oral pill called venglustat could slow the progression of late-onset Tay-Sachs and Sandhoff disease, rare and severe inherited disorders that damage the brain and nerves. It involved about 75 adults and some younger participants over a two-year treatment period. The main goals were to see if the drug reduced harmful substances in the body and improved or stabilized physical abilities like hand coordination and walking.

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Contacts and locations

Locations

  • APHP - Centre Hospitalier la Pitié Salpetrière, Service de Neurologie, 47-83 Boulevard De l'Hôpital_Investigational site number 2500001

    Paris, 75013, France

  • Ataxia Center and HD Center of Excellence, 300 UCLA Med Plaza, Suite B200 - Investigational site number 8400004

    Los Angeles, California, 90095, United States

  • Cambridge University Hospitals NHS Foundation Trust Addenbrookes Hospital Hills Road_investigational site number 8260001

    Cambridge, Cambridgeshire, CB2 OQQ, United Kingdom

  • Centro Hospitalar Universitário Lisboa Norte- Hospital Santa Maria Avenida Professor Egas Moniz_investigational site number 6200002

    Lisbon, 1649-035, Portugal

  • Clínica Universitaria Reina Fabiola Córdoba_investigational site number 0320001

    Córdoba, X5004FHP, Argentina

  • Emory Genetics - Investigational site number 8400006

    Atlanta, Georgia, 30322, United States

  • Gazi Universitesi Tip Fakultesi Emniyet Street Mevlana Blv Besevler Yenimahalle_investigational site number 7920001

    Ankara, 06500, Turkey (Türkiye)

  • Hospital Clínico Universitario de Santiago-CHUS. Travesia de Chopuana, s/n_investigational site number 7240002

    Santiago de Compostela, Galicia [Galicia], 15706, Spain

  • Hospital Maternoinfantil Sant Joan de Déu Paseo de Sant Joan de Déu, 2_investigational site number 7240001

    Esplugues de Llobregat, Catalunya [Cataluña], 08950, Spain

  • Hospital Universitari de Bellvitge. Feixa Llarga, S / N_investigational site number 7240004

    L'Hospitalet de Llobregat, Barcelona [Barcelona], 08907, Spain

  • Hospital Universitario Austral Pilar, Buenos Aires_Unidad de Investigación Clínica_investigational site number 0320002

    Pilar, Buenos Aires, B1629ODT, Argentina

  • Hospital de Clinicas de Porto Alegre _investigational site number 0760001

    Porto Alegre, Rio Grande do Sul, 90035 003, Brazil

  • Investigational Site Number : 3800001

    Milan, 20133, Italy

  • Investigational Site Number : 8260003

    Manchester, M13 9WL, United Kingdom

  • Japanese Red Cross Akita Hospital 222-1 Nawashirosawa, Kamikitatesaruta_investigational site number 3920001

    Akita, Akita, 010-1495, Japan

  • Massachusetts General Hospital - Charles River Plaza 175 Cambridge St. Ste 340 - Investigational site number 8400002

    Boston, Massachusetts, 02114, United States

  • NIH National Human Genome Research Institute - 10 Center Dr - Bldg. 10 CRC3-2551 MSC 1205 - Investigational site number 8400005

    Bethesda, Maryland, 20892, United States

  • NYU Langone - 550 First Avenue-Investigational site number 8400001

    New York, New York, 10016, United States

  • Research Center Of Neurology 80, Volokolamskoye shosse_investigational site number 6430001

    Moscow, 125367, Russia

  • Salford Royal NHS Foundation Trust Salford Royal Hospital Stott Lane_investigational site number 8260002

    Salford, M6 8HD, United Kingdom

  • Tohoku Medical and Pharmaceutical University Hospital_investigation site number 3920002

    Sendai, Miyagi, 983-8512, Japan

  • Universitätsklinikum der Justus-Liebig-Universität Gießen Zentrum für Kinderheilkunde und Jugendmedizin Feulgenstraße 10-12_investigational site number 2760001

    Giessen, 35390, Germany

  • Vseobecna Fakultni Nemocnice V Praze Metabolicke centrum U Nemocnice 2_investigational site number 2030001

    Prague, 12808, Czechia

Conditions

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