Neurosarcoidosis and paraneurosarcoidosis: new online registration of patients

• Published in: Nederlands tijdschrift voor geneeskunde Vol. 159; p. A8383
• Main Authors: Datema, Mirjam, Tannemaat, Martijn R, Drent, Marjolein, Hoitsma, Elske
• Format: Journal Article
• Language: Dutch
• Published: Netherlands 2015
• Subjects: Central Nervous System Diseases - diagnosis; Central Nervous System Diseases - drug therapy; Diagnosis, Differential; Humans; Netherlands; Registries; Sarcoidosis - diagnosis; Sarcoidosis - drug therapy; Treatment Outcome; Tumor Necrosis Factor-alpha - antagonists & inhibitors; Netherlands
• ISSN: 0028-2162; 1876-8784

The clinical spectrum of neurosarcoidosis is highly diverse; virtually any neurological syndrome can present, depending upon granuloma localization. There are indications that neurosarcoidosis is insufficiently recognized as a separate clinical entity. In the absence of major prospective clinical trials, we launched a large national online registry of neurosarcoidosis patients in the Netherlands in June 2014 at www.neurosarcoidose.nl. When a patient with sarcoidosis presents with neurological symptoms that may compatible with sarcoidosis, it is important to locate sites of disease activity accessible for biopsy outside the nervous system. Small nerve fibre neuropathy is a common neurological complication of sarcoidosis. It is considered an epiphenomenon, and therefore classified as 'para-neurosarcoidosis'. Neurological symptoms causing disability are an indication for immunosuppressive therapy. There is increasing evidence for the effective treatment of refractory neurosarcoidosis using biologicals. Whether the intravenous administration of immunoglobulins or ARA290, an erythropoietin derivative with TNF-α-antagonistic and tissue-protective characteristics, is effective for small nerve fibre neuropathy in sarcoidosis is subject for study.