Observatoire Des Patients Atteints de Laminopathies et Emerinopathies (Observatory for PAtients With Laminopathies and Emerinopathies)
NCT ID: NCT03058185
Last Updated: 2025-03-13
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
800 participants
OBSERVATIONAL
2013-07-11
2033-07-11
Brief Summary
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The OPALE objectives are to provide a tool allowing detailed capture of patient genetic, neurological, cardiological, endocrinological and respiratory assessments, in order to allow i) precise disease natural history, ii) evaluation of different disease complication frequency and iii) identification of prognosis factors.
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Detailed Description
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Conditions
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Study Design
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CASE_ONLY
PROSPECTIVE
Eligibility Criteria
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Inclusion Criteria
* Regular followup in France.
* Signed informed consent
Exclusion Criteria
ALL
No
Sponsors
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Institute of Myology
OTHER
Assistance Publique - Hôpitaux de Paris
OTHER
Institut National de la Santé Et de la Recherche Médicale, France
OTHER_GOV
Pitié-Salpêtrière Hospital
OTHER
Responsible Party
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Bruno Eymard
Clinical Professor-Neuromuscular Unit
Principal Investigators
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Karim Wahbi, MD, PhD
Role: PRINCIPAL_INVESTIGATOR
Assistance Publique - Hôpitaux de Paris
Gisele Bonne, PhD
Role: PRINCIPAL_INVESTIGATOR
Institut National de la Santé Et de la Recherche Médicale, France
Rabah Ben Yaou, MD
Role: PRINCIPAL_INVESTIGATOR
Institut de myologie
Locations
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Centre de référence maladies neuromusculaires,CHU d'Angers
Angers, Angers, France
CHU Strasbourg
Strasbourg, Bas-Rhin, France
CHU Marseille
Marseille, Bouches-du-Rhône, France
CHU Caen
Caen, Calvados, France
CHU Brest
Brest, Finistère, France
CHU Nimes
Nîmes, Gard, France
CHU Bordeaux
Bordeaux, Gironde, France
Centre de Référence de Pathologie NeuroMusculaire, CHU Toulouse
Toulouse, Haute-Garonne, France
CHU Montpelleir
Montpellier, Hérault, France
CHU Rennes
Rennes, Ille-et-Vilaine, France
CHU Tours
Tours, Indre-et-Loire, France
Centre de référence des maladies neuromusculaires, CHRU Lille
Lille, Lille, France
Laboratoire d'Explorations Fonctionnelle, CHU Nantes
Nantes, Loire-Atlantique, France
Centre de référence des maladies neuromusculaires, CHU Lyon
Lyon, Lyon, France
CHU Nancy
Nancy, Meurthe-et-Moselle, France
Centre de référence maladies neuromusculaires ile de France, Hôpital Armand Trousseau
Paris, Paris, France
I-Motion Pédiatrique, Hôpital Armand Trousseau
Paris, Paris, France
Service d'endocrinologie, diabétologie et endocrinologie de la reproduction, Hôpital Saint Antoine
Paris, Paris, France
Centre de référence maladies neuromusculaires ile de France, Institut de myologie, GH Pitié-Salpêtrière
Paris, Paris, France
Institut de cardiologie, GH Pitié-Salpêtrière
Paris, Paris, France
Service de cardiologie, Hôpital Cochin
Paris, Paris, France
Cardiologie et maladies vasculaires, Hôpital Européen Georges-Pompidou HEGP
Paris, Paris, France
CHU Clermont-Ferrand
Clermont-Ferrand, Puy-de-Dôme, France
CHU Rouen
Rouen, Seine-Maritime, France
Centre Expert de Pathologie Neuromusculaire - Département de Pathologie
Créteil, Val-de-Marne, France
Centre de référence des maladies neuromusculaires Ile de France, Hôpital Raymond Poincaré
Garches, Yvelines, France
CHU Grenoble
Grenoble, , France
Centre de référence maladies neuromusculaires ile de France, Hôpital Necker Enfants malades
Paris, Île-de-France Region, France
Countries
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Central Contacts
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Facility Contacts
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Albert Hagege, MD, PhD
Role: primary
References
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Wahbi K, Ben Yaou R, Gandjbakhch E, Anselme F, Gossios T, Lakdawala NK, Stalens C, Sacher F, Babuty D, Trochu JN, Moubarak G, Savvatis K, Porcher R, Laforet P, Fayssoil A, Marijon E, Stojkovic T, Behin A, Leonard-Louis S, Sole G, Labombarda F, Richard P, Metay C, Quijano-Roy S, Dabaj I, Klug D, Vantyghem MC, Chevalier P, Ambrosi P, Salort E, Sadoul N, Waintraub X, Chikhaoui K, Mabo P, Combes N, Maury P, Sellal JM, Tedrow UB, Kalman JM, Vohra J, Androulakis AFA, Zeppenfeld K, Thompson T, Barnerias C, Becane HM, Bieth E, Boccara F, Bonnet D, Bouhour F, Boule S, Brehin AC, Chapon F, Cintas P, Cuisset JM, Davy JM, De Sandre-Giovannoli A, Demurger F, Desguerre I, Dieterich K, Durigneux J, Echaniz-Laguna A, Eschalier R, Ferreiro A, Ferrer X, Francannet C, Fradin M, Gaborit B, Gay A, Hagege A, Isapof A, Jeru I, Juntas Morales R, Lagrue E, Lamblin N, Lascols O, Laugel V, Lazarus A, Leturcq F, Levy N, Magot A, Manel V, Martins R, Mayer M, Mercier S, Meune C, Michaud M, Minot-Myhie MC, Muchir A, Nadaj-Pakleza A, Pereon Y, Petiot P, Petit F, Praline J, Rollin A, Sabouraud P, Sarret C, Schaeffer S, Taithe F, Tard C, Tiffreau V, Toutain A, Vatier C, Walther-Louvier U, Eymard B, Charron P, Vigouroux C, Bonne G, Kumar S, Elliott P, Duboc D. Development and Validation of a New Risk Prediction Score for Life-Threatening Ventricular Tachyarrhythmias in Laminopathies. Circulation. 2019 Jul 23;140(4):293-302. doi: 10.1161/CIRCULATIONAHA.118.039410. Epub 2019 Jun 3.
Related Links
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Other Identifiers
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CPP58-12, ID-RCB2012-A00791
Identifier Type: -
Identifier Source: org_study_id
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