Table 2.

Study assessments, CARE-MND and MND-SMART data requests

Data source	Name of assessment
Study assessment questionnaires: FIT-P-MND participant with MND	ACT-Q (Attitudes towards Clinical Trial Participation Questionnaire)
	HADS (Hospital Anxiety and Depression Scale)27 28
	STAI-Y (State-Trait Anxiety Inventory-Form Y)29
	PHQ-9 (9-Item Patient Health Questionnaire)30 31
	ALSSQOL-20 (ALS-Specific Quality of Life Questionnaire-Brief Form)32
	CDC HQOL-4 (Centre for Disease Control and Prevention-Health-Related Quality of Life)33
Study assessment questionnaires: carer/relative	b-DAS (Brief Dimensional Apathy Scale)34 35
CARE-MND data request	Clinical phenotype data
	Date of diagnosis
	Age at diagnosis
	Classification of MND
	Site of onset
	Family history
CARE-MND or MND-SMART data request	ALS-FRS (R) (Amyotrophic Lateral Sclerosis Functional Rating Scale- Revised)14
	ECAS (Edinburgh Cognitive and Behavioural ALS Screen)36
MND-SMART data request	MND-SMART recruitment and retention data
	Date MND-SMART Participant Information Sheet given
	Date of screening
	Date of randomisation
	Date of withdrawal
	Date of last appointment if withdrawn
	Reason for withdrawal if provided
	Status (alive/deceased)
	Date of death (if applicable)

CARE, Clinical Audit Research and Evaluation; MND, motor neuron disease; SMART, Systematic Multi-Arm Randomised Adaptive Trial.