Aim of the neurosarcoidosis referral centre
Care of patients with neurosarcoidosis is complex, because most frequently multiple medical specialists are involved in treating these patients at the same time, for example a neurologist, a pulmonologists, rheumatologist and an ophthalmologist. Because this disease is relatively rare, we share the opinion that care for this complex disease should occur in certain specialized hospitals. Our aim is to improve care for patients with neurosarcoidosis. Therefore, we established an tertiary referral centre for neurosarcoidosis in the AMC in Amsterdam in the summer of 2015. This includes an outpatient clinic for patients with neurosarcoidosis. Additionally, we have started various research projects with the aim to improve the diagnostic process and outcome of this serious disease.
Which research projects are we currently conducting?
Our scientific research aims at both the development and the course of the disease. For example, we are conducting genetic research in families in which (neuro)sarcoidosis occurs frequently, to investigate why some people are more vulnerable to develop the disease. Firstly, to better understand the clinical picture and course of the disease we have collected all the knowledge that exist in the international literature to adequately define the disorder in a so-called meta-analysis and systematic review. Secondly, we have discussed our own experiences with the disease according to our expertise which we developed over the past years. Furthermore, we have established a biobank in which we are collecting patient materials, like blood and cerebrospinal fluid, but also clinical data, results of ancillary investigations and information about outcome and treatment. Because advice concerning the optimal diagnostic process varies extensively, we are currently systematically evaluating the use of ancillary investigations and looking for new ways to diagnose neurosarcoidosis in cerebrospinal fluid. We hope to accomplish this by measuring various proteins in cerebrospinal fluid who are characteristic for sarcoidosis. Additionally we are evaluating the value of a PET-CT scan in the diagnostic process of neurosarcoidosis. Lastly, we are working closely together with the Erasmus MC to describe the value of treating patients with selective antibodies against the immune system, like infliximab. Our main aim is to improve care for patients with neurosarcoidosis by doing patient-related research.
What do we expect from you?
During your visit to the AMC you may be asked if you would like to participate in scientific research for neurosarcoidosis. This involves a biobank study and we will ask you if we may use clinical data of the disease anonymously to describe the clinical picture of the disease and evaluate ancillary investigations. Both children and adults suspected of neurosarcoidosis may participate. A biobank study means that bodily materials of patients will be collected for further research. In blood and cerebrospinal fluid, apart from the standard tests for regular diagnostic investigations, additional tests will be performed for study purposes only. Also, collected materials during a biopsy will be included in the biobank. Furthermore, data concerning the clinical characteristics, ancillary investigations, the course an treatment of the disease will be collected.
Are there additional risks if you participate in the study?
When informed consent is given remaining cerebrospinal fluid that is obtained as standard care with a lumbar puncture will be stored for further testing. No additional puncture is required for study purposes. Additional lumbar punctures will only be performed, when additional spinal fluid is required to make a diagnosis or to evaluate treatment effect. Remaining material will be collected in the biobank. Also, blood of the patients will be collected for DNA analysis. If possible, the blood withdrawal is combined with a blood withdrawal for standard diagnostic purposes to prevent extra punctures. No additional health risks are associated with participating in this study.