Project Coordination, JWMDRC, Newcastle
JWMDRC, NEWCASTLE
Clinical Research Associate
Dra. Marianela Schiava
Medical specialist in adult neurology (César Milstein Hospital, Buenos Aires, and specialist training programme at the University of Buenos Aires, Argentina)
Fellowship in neuromuscular disorders and electromyography, British Hospital, Buenos Aires, Argentina
Clinical Research Associate at the JWMDRC, UK
Final-year PhD student at the JWMDRC and Newcastle University, UK
JWMDRC Biobank, Newcastle
Hospital Sant Joan de Déu, BARCELONA
Coordination Support
Dr. Andrés Nascimento
Coordinator of the Neuromuscular Pathology Unit, Sant Joan de Déu Hospital, and the Comprehensive Care Unit for Neuromuscular Patients (UTIN), Spain
Member of the National Referral Centres (CSUR) and the European Reference Network for Rare Neuromuscular Diseases (ERN-EURO-NMD)
Scientific Advisor for patient associations with neuromuscular diseases
Coordination Support
Dr. Carlos Ortez
Former team members, JWMDRC, Newcastle
STEERING COMMITTEE
Coordination Support
Dr. Andrés Nascimento
Coordinator of the Neuromuscular Pathology Unit, Sant Joan de Déu Hospital, and the Comprehensive Care Unit for Neuromuscular Patients (UTIN), Spain
Member of the National Referral Centres (CSUR) and the European Reference Network for Rare Neuromuscular Diseases (ERN-EURO-NMD)
Scientific Advisor for patient associations with neuromuscular diseases
Dr. Jorge Alfredo Bevilacqua Rivas
Associate Professor and Coordinator of the Neuromuscular Unit, Department of Neurology and Neurosurgery, University of Chile Clinical Hospital, Faculty of Medicine, University of Chile.
Coordinator of the Neuromuscular Pathology Unit and Myology Laboratory, Neuroscience Centre, Clínica Dávila, Santiago.
Specialist in Adult Neurology and Electrophysiologist (EMG and NCS), University of Chile Clinical Hospital.
Coordinator of the Euro-Latin American Myology School (EVELAM).
Member of the Continuous Education Committee of Treat-NMD.
Honorary Foreign Member of the French Society of Neurology (SFN).
Member of the AAANEM and AAN.
Dra. Ma Soledad Monges
Paediatric neurologist. Head of the Neurology Department and coordinator of the care, teaching, and research programme for neuromuscular patients at J. P. Garrahan Paediatric Hospital.
President of the Argentine Society of Paediatric Neurology.
Dra. Peggy Martínez Esteban
Neurologist, MSc in Neurosciences. Neurology Service, Clinical Neurophysiology Coordinator, National Institute of Child Health San Borja, Lima, Peru.
Member of the Peruvian Society of Neurology. Director of the Neuromuscular Diseases Chapter of the Peruvian Society of Neurology.
Director of Neuromusculares Peru.
Dr. Marco Javier Casartelli Galeano
Director of the National Neonatal Screening Programme, Ministry of Public Health and Social Welfare of Paraguay.
Head of the Paediatric Neurology Service, General Paediatric Hospital Niños de Acosta Ñu, Asunción, Paraguay.
Doctor of Medicine and Surgery, Faculty of Medical Sciences, National University of Asunción.
Assistant Physician in the Neurology Service, Sant Joan de Déu Hospital, Barcelona, Spain (2007–2010).
Dra. Juliana Gurgel Giannetti
Dr. Alfonso Gutiérrez Mata
Paediatric Neurologist, Neurology Department, National Children's Hospital "Dr Carlos Sáenz Herrera", San José, Costa Rica
Coordinator of the Neuromuscular Diseases Clinic
Member of the Ibero-American Academy of Paediatric Neurology (AINP)
Dra. Rosa Elena Escobar Cedillo
Faculty of Medicine, National Autonomous University of Mexico (U:N:A)
Head of the Electromyography and Muscular Dystrophy Service at the National Rehabilitation Institute, Mexico City
Specialist in Rehabilitation Medicine. Master’s degree in health sciences. Advanced Specialisation in Neuromuscular Diseases. Advanced Specialisation in Electrodiagnostic Medicine. Medical Secretary of the Mexican Society of Muscular Dystrophy A.C.
Participating Centres
FUNDING
The Latin-SEQ team in Newcastle has secured funding for the first four years of the project. This will enable the formation of the consortium and the sequencing and analysis of the first 1,000 patients with neuromuscular diseases recruited in LATAM. The costs for shipping biological samples to Newcastle upon Tyne, UK, as well as the materials required for sample collection and packaging, will be covered by the project coordination. However, other costs related to patient recruitment and sample management will be the responsibility of each participating institution.
Project Coordination, JWMDRC, Newcastle
JWMDRC, NEWCASTLE
Clinical Research Associate
Dra. Marianela Schiava
Medical specialist in adult neurology (César Milstein Hospital, Buenos Aires, and specialist training programme at the University of Buenos Aires, Argentina)
Fellowship in neuromuscular disorders and electromyography, British Hospital, Buenos Aires, Argentina
Clinical Research Associate at the JWMDRC, UK
Final-year PhD student at the JWMDRC and Newcastle University, UK
JWMDRC Biobank, Newcastle
Hospital Sant Joan de Déu, BARCELONA
Coordination Support
Dr. Andrés Nascimento
Coordinator of the Neuromuscular Pathology Unit, Sant Joan de Déu Hospital, and the Comprehensive Care Unit for Neuromuscular Patients (UTIN), Spain
Member of the National Referral Centres (CSUR) and the European Reference Network for Rare Neuromuscular Diseases (ERN-EURO-NMD)
Scientific Advisor for patient associations with neuromuscular diseases
Coordination Support
Dr. Carlos Ortez
Former team members, JWMDRC, Newcastle
STEERING COMMITTEE
Coordination Support
Dr. Andrés Nascimento
Coordinator of the Neuromuscular Pathology Unit, Sant Joan de Déu Hospital, and the Comprehensive Care Unit for Neuromuscular Patients (UTIN), Spain
Member of the National Referral Centres (CSUR) and the European Reference Network for Rare Neuromuscular Diseases (ERN-EURO-NMD)
Scientific Advisor for patient associations with neuromuscular diseases
Dr. Jorge Alfredo Bevilacqua Rivas
Associate Professor and Coordinator of the Neuromuscular Unit, Department of Neurology and Neurosurgery, University of Chile Clinical Hospital, Faculty of Medicine, University of Chile.
Coordinator of the Neuromuscular Pathology Unit and Myology Laboratory, Neuroscience Centre, Clínica Dávila, Santiago.
Specialist in Adult Neurology and Electrophysiologist (EMG and NCS), University of Chile Clinical Hospital.
Coordinator of the Euro-Latin American Myology School (EVELAM).
Member of the Continuous Education Committee of Treat-NMD.
Honorary Foreign Member of the French Society of Neurology (SFN).
Member of the AAANEM and AAN.
Dra. Ma Soledad Monges
Paediatric neurologist. Head of the Neurology Department and coordinator of the care, teaching, and research programme for neuromuscular patients at J. P. Garrahan Paediatric Hospital.
President of the Argentine Society of Paediatric Neurology.
Dra. Peggy Martínez Esteban
Neurologist, MSc in Neurosciences. Neurology Service, Clinical Neurophysiology Coordinator, National Institute of Child Health San Borja, Lima, Peru.
Member of the Peruvian Society of Neurology. Director of the Neuromuscular Diseases Chapter of the Peruvian Society of Neurology.
Director of Neuromusculares Peru.
Dr. Marco Javier Casartelli Galeano
Director of the National Neonatal Screening Programme, Ministry of Public Health and Social Welfare of Paraguay.
Head of the Paediatric Neurology Service, General Paediatric Hospital Niños de Acosta Ñu, Asunción, Paraguay.
Doctor of Medicine and Surgery, Faculty of Medical Sciences, National University of Asunción.
Assistant Physician in the Neurology Service, Sant Joan de Déu Hospital, Barcelona, Spain (2007–2010).
Dra. Juliana Gurgel Giannetti
Dr. Alfonso Gutiérrez Mata
Paediatric Neurologist, Neurology Department, National Children's Hospital "Dr Carlos Sáenz Herrera", San José, Costa Rica
Coordinator of the Neuromuscular Diseases Clinic
Member of the Ibero-American Academy of Paediatric Neurology (AINP)
Dra. Rosa Elena Escobar Cedillo
Faculty of Medicine, National Autonomous University of Mexico (U:N:A)
Head of the Electromyography and Muscular Dystrophy Service at the National Rehabilitation Institute, Mexico City
Specialist in Rehabilitation Medicine. Master’s degree in health sciences. Advanced Specialisation in Neuromuscular Diseases. Advanced Specialisation in Electrodiagnostic Medicine. Medical Secretary of the Mexican Society of Muscular Dystrophy A.C.
Participating Centres
FUNDING
The Latin-SEQ team in Newcastle has secured funding for the first four years of the project. This will enable the formation of the consortium and the sequencing and analysis of the first 1,000 patients with neuromuscular diseases recruited in LATAM. The costs for shipping biological samples to Newcastle upon Tyne, UK, as well as the materials required for sample collection and packaging, will be covered by the project coordination. However, other costs related to patient recruitment and sample management will be the responsibility of each participating institution.
