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Table 8 Management of movement disorder and pain in CLN2 disease, statements and consensus data

From: Guidelines on the diagnosis, clinical assessments, treatment and management for CLN2 disease patients

Statement Responders Evidence level Consensus
Mobilisation and repositioning can help reduce pain. Medical aids such as a standing device or systems for positioning in bed should be considered 40 C 93
There is a complex movement disorder in CLN2 disease that includes, but is not limited to, dystonia and involuntary muscle movements. Treatment approaches should be developed in cooperation by experts for NCL and movement disorders 40 C 90
In CLN2 complex movement disorder paired with a complex seizure phenotype and myoclonic jerks might mimic pain-like episodes that have a different origin (e.g. agitation, boredom, fear and even happiness) should be managed pro-actively according to the aetiology 40 C 90