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Table 3 Clinical recommendations and management of CLN2, statements and consensus data

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

Statement Responders Evidence level Consensus
All patients with suspected CLN2 disease should be referred to a centre with expertise in managing patients with NCL disorders 41 NA 95
The first consultation should be conducted by a physician with experience of treating CLN2, when possible, as soon as possible after diagnosis. This should include a full discussion of disease pathology, progression, treatment options and management. Ongoing information should be provided to optimise patient outcomes 41 NA 95
A paediatric neurologist, rare disease specialist with clinical experience in CLN2 disease supported by a local multidisciplinary team, should lead the patient’s care 41 NA 89
Holistic care is critical for CLN2 management and a multidisciplinary team (MDT) is advised where possible to manage the diverse range of disease manifestations 41 B 96
Emotional and psychological family support should be recommended and offered by an appropriate health care provider to the patient, caregiver and full family 41 D 97
Psychological support or counselling should be offered/made available, where available to families following diagnosis and should be informed of relevant patient organisation contacts when deemed appropriate 41 NA 95