At the University Hospitals Leuven, Leuven, Belgium, a specialised and multidisciplinary clinic for patients with neuromuscular disorders exists, both for adults (Department of Neurology, Prof. Dr. Kristl Claeys and Prof. Dr. Philip Van Damme) and for children/adolescents (Department of Neuropediatrics, Prof. Dr. Nathalie Goemans, Prof. Dr. Liesbeth De Waele and Prof. Dr. Gunnar Buyse). Our clinic for neuromuscular disorders is a National Reference Centre for Neuromuscular Diseases (NMRC), which obtains reimbursement of the national government.
In our neuromuscular reference centre patients with the following rare neuromuscular diseases are included: rare acquired and hereditary muscle diseases, rare acquired and hereditary peripheral nerve diseases, neuromuscular junction disorders, motor neuron diseases including ALS and related diseases, SMA and related disorders, mitochondrial diseases, and spinocerebellar degeneration. Both ambulatory and hospitalised neuromuscular patients are treated in our centre.
Our objectives are to provide optimal care and treatment for the patients and their caregivers, to train medical and paramedical personnel, to conduct investigator-driven mono- and multicentric trials in neuromuscular diseases and to participate in industry-sponsored therapeutic trials in neuromuscular disorders. The clinic is led by two neurologists Philip Van Damme and Kristl Claeys (adult patients) and three neuropediatricians Nathalie Goemans, Liesbeth De Waele and Gunnar Buyse (children/adolescents up to 18 years of age), that are all specialised in neuromuscular disorders. The neuromuscular clinic is supported by a multidisciplinary team, including rehabilitation specialists, pneumologists, cardiologists, orthopaedic surgeons, gastroenterologists, rheumatologists, geneticists/genetic counsellors, occupational therapists, physiotherapists, speech therapists, psychologists, nurses, social workers and dieticians.
A large variety of diagnostic procedures is available, including muscle, nerve and skin biopsies (in collaboration with the neuropathologists), electromyography with nerve conduction studies and repetitive stimulation tests and single-fiber EMG and autonomic nervous system tests (in collaboration with the neurophysiologists), muscle MRI imaging (in collaboration with the radiologists), genetic analyses (in collaboration with the geneticists) and biochemical analyses. Furthermore, a biobank for e.g. serum, DNA, cerebrospinal fluid, fibroblasts is available.
We are also very active in research activities on neuromuscular disorders as well as in clinical trials in patients with diverse neuromuscular diseases. In the neuromuscular disease network, we also are willing to contribute to the creation of care guidelines in order to standardise care of patients with neuromuscular diseases.
Kristl Claeys, MD, PhD, is a neurologist specialised in neuromuscular disorders working at the University Hospitals Leuven, Belgium. In Leuven, she is affiliated with the largest Neuromuscular Reference Centre in Belgium, together with her colleague and neuromuscular neurologist Philip Van Damme. Kristl Claeys is appointed as associate Professor at the University of Leuven (KU Leuven).