[Multicentric study of medical care and practices in spinal muscular atrophy type 1 over two 10-year periods].

Aim: Questions about care practices and the role of palliative care in pediatric neurodegenerative diseases have led the Neuromuscular Committee of the French Society of Neurology to conduct a retrospective study in spinal muscular atrophy type 1, a genetic disease most often leading to death before the age of 1 year.

Material And Methods: A retrospective multicenter study from pediatricians included in the reference centers of pediatric neuromuscular diseases was carried out on two 10-year periods (1989-1998 and 1999-2009).

Results: The 1989-1998 period included 12 centers with 106 patients, the 1999-2009 period 13 centers with 116 children.