|
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
|
