Center for children with White Matter Diseases
Director: Marjo van der Knaap
About the Center
Since Magnetic Resonance Imaging (MRI) and Magnetic Resonance Spectroscopy (MRS) became available at the VU University Medical Center in Amsterdam in 1985, the Departments of Child Neurology (Dr. Marjo S. van der Knaap) and Neuroradiology (Dr. Jaap Valk) have collaborated in the analysis of white matter disorders. It soon became clear that the pattern of MRI abnormalities was different for different disorders and that, therefore, MR images could provide useful information about the diagnosis in a patient with a white matter disorder. Based on this information, an MRI "pattern recognition" programme was developed that proved to work and has received worldwide recognition since. Subsequently, the programme was applied to unclassified white matter disorders and has been able to contribute to the definition of several new disorders. They have published many articles on the subject of white matter disorders and a book (Magnetic Resonance of Myelin, Myelination and Myelin Disorders, Springer Verlag, 1995), worldwide considered as a standard text in the field. They have been awarded the gold medal of the International Society of Magnetic Resonance in Medicine for pioneering work on Magnetic Resonance of neurodegenerative and neurometabolic disorders of children. Over the years, a growing number of children with a white matter disorder were referred to the VU medical Institute and many MRI's of such children were sent for a second opinion. In 2000, it was decided to establish a Center for Childhood White Matter Disorders at the VU Medical Institute. In 2008, Prof. van der Knaap was awarded the N.W.O. Spinoza premie.
The purpose of the Center is to optimize diagnostics and patient care for children with a white matter disorder and to perform research on the subject.
International setting
The Center for Childhood White Matter Disorders has ongoing collaborations with many child neurologists around the world and with the American patient and parent organization, the "United Leukodystrophy Foundation". The research of the center is embedded in the Institute for Clinical and Experimental Neurosciences and is supported by the VU University Medical Center.
For studies on the mechanisms underlying some of the childhood white matter disorders we also have several collaborators. We work together with Dr. Chris Proud (Vancouver, Canada) and Dr. Jim Powers (Rochester, USA) on vanishing white matter disease. Together with Prof. Steve Goldman (Rochester, USA) we are studying white matter progenitor cells. We hope that such cells can be used for the treatment of some of the white matter disorders in the future. For studies on LBSL we are collaborating with Prof. Catherine Florentz (Strasbourg, France) and Prof. Rudy van Coster (Gent, Belgium). Together with Dr. Estevez (Barcelona, Spain) we are studying the effects of mutations in the protein MLC1.
Second opinions
The staff of the center is available for second opinions of patients with a classified or unclassified white matter disorder. The second opinion may involve all aspects: diagnosis, information, and treatment.
Second opinions concerning diagnosis are most frequently asked. It can be a paper second opinion in which we re-evaluate the available MRI's and, clinical information and results of the laboratory tests. Your physician can send us all information and we will discuss them in our weekly morning rounds, where the team is present. We may advice new tests. We may advice a new MRI. Sometimes, we ask to send blood samples if a genetic study is helpful. If we don't know the diagnosis, we will store the data and search for identical cases we may have seen in the past or may see in the future. Of course, the data you or your physician has sent us will be treated confidentially. A second opinion may also include a personal visit with your child to Amsterdam, so that one of us can examine your child personally and speak with you.
>Contact Marjo van der Knaap directly for a second opinion.
