Leiden University Medical Center

The Leiden University Medical Centre is a national, tertiary referral centre for patients with neuromuscular disorders, with specific expertise in Duchenne and Becker muscular dystrophy (DMD and BMD), Myasthenia gravis (MG) and Lambert-Eaton myasthenic syndrome (LEMS), Inclusion body myositis (IBM), Facioscapulohumeral muscular dystrophy (FSHD) and Oculapharyngeal muscular dystrophy (OPMD). Together with five other neuromuscular university centres in the Netherlands that also are a HCP in the EURO-NMD, they are a partner within the Dutch Neuromuscular Centre (“Spierziekten Centrum Nederland”; https://www.spierziektencentrum.nl)

The LUMC has outpatient as well as inpatient, day-care and paediatric facilities for a wide range of neuromuscular diseases. The neuromuscular centre at the LUMC is recognized as a national expert centre by the Dutch Federation of Universities (NFU) and Ministry of Welfare, Health and Sports, and welcomes adult and paediatric patients with the full range of neuromuscular diseases. The Neurology department has three adult neurologists prof. Jan Verschuuren, dr. Chiara Straathof and dr. Umesh Badrising, a paediatric neurologist dr. Erik Niks, and a clinical neurophysiologists dr. Martijn Tannemaat. In addition specialized neuromuscular nurses, trial and care coordinators, trial nurses, and PhD students are part of the team. The neuromuscular clinic is supported by a multidisciplinary team; rehabilitation physicians (and related physiotherapy, speech therapy, occupational therapy, social help), pulmonologists, cardiologists (both paediatric and adult), Ear, Nose and Throat (ENT) specialists, orthopaedic and thoracic surgeons, and a neuropathologist. The ENT department has extensive expertise with swallowing problems and myotomy procedures. A specialized multidisciplinary outpatient clinic facility is available for children with neuromuscular diseases, especially Duchenne muscular dystrophy. All tests and consultations with the team (paediatric neurologist, rehabilitation physician, paediatric cardiologist and pulmonologist, orthopaedic surgeon, physiotherapist) are organized in a one day visit to the LUMC and coordinated by a specialized nurse and secretary.

Within the LUMC a complete range of (genetic) diagnostic tests is available, including serological, haematological, immunological, muscle, skin or nerve biopsies and metabolic tests. Neurophysiological testing, including electromyography, single-fiber electromyography, autonomic nervous system tests, tilting table testing, nerve or muscle echography and several function tests, like 6MWT, QMG, MGC, MG-ADL are available for routine patient care.

We aim to provide optimal care and treatment for the patients and their caregivers. Therefore, amongst others, we train medical and paramedical personnel. Due to the large number of patients that are seen, a great deal of knowledge has been obtained with respect to epidemiology, clinical aspects and natural history of the disease, diagnostic workup, treatment and follow-up. . We are also very active in (fundamental, translational) research activities, biobank initiatives and clinical trials concerning neuromuscular disorders. We have active partnerships with stakeholders, such as patient organisations, regulators and pharmaceutical companies. Members of our neuromuscular team are participating in the development of national and international standards of care. They are medical advisor of the national patient organisation sections on myositis (dr. Umesh Badrising), or myasthenia gravis (prof. Jan Verschuuren). Several, neurologists and researchers participate and contribute to annual patient gatherings and work together with the patient organisations (Spierziekten Nederland; Duchenne Parent Project) in providing optimal information to the patients, general practitioners and colleagues.