Area	Data
Demographics	Age at diagnosis Sex Health board Date of diagnosis Date of death
Phenotype	Motor neuron disease sub-type Site of onset Areas currently affected
Interventions use	Riluzole Non-invasive ventilation Gastrointestinal feeding tube insertion
Cognition and behaviour	Date of cognitive assessment Edinburgh Cognition Assessment Screen score for cognition and behaviour46
Speech	Referral to Speech and Language Therapist Sialorrhoea Problematic saliva
Physical symptoms	Additional Amyotrophic Lateral Sclerosis Functional Rate Scale—Revised (ALSFRS(R)-r) data where required due to self-reported data missing17 Additional symptoms and date of onset
Research Participation	MND-SMART enrolment Other research projects consented to