Table 1.

Summary of data acquisition strategy

Data source	Instrument type	Outcomes collected	Administration schedule	Estimated completion time (min)
Profile	N/A	Demographics Date of birth (full or partial depending on country) Sex Home postcode Healthcare system identifier (eg, NHS number) (outcome only collected in countries where permitted) Current enrolment in any MG registries MG characteristics Ocular or generalised Presence of any thymus involvement (eg, thymoma, follicular hyperplasia) MG antibody status Usual symptom severity in months preceding study enrolment (MGFA classification) Age at MG symptom onset MG symptom severity at diagnosis (MGFA classification) Presence of any comorbidities MG diagnosis and treatment Age at seeking care or a diagnosis for MG Age when diagnosed with MG Diagnostic tests performed to achieve MG diagnosis Healthcare professionals involved in diagnosis Routine and rescue MG treatments at any time since diagnosis Routine and rescue MG treatments within preceding 12 months Need for any regular informal care Person providing informal care Hours of informal care needed per week Impact on person providing informal care (eg, inability to work, stress) Impact of MG on family and friends (eg, limited ability to make plans or socialise) Living situation (eg, living independently or in a care home) Past or current participation in MG clinical trials Treatments received in any MG clinical trials Healthcare resource use Hospital visits for MG exacerbations at any time since diagnosis (emergency department, inpatient, intensive care) Hospital visits for MG exacerbations within preceding 12 months (emergency department, inpatient, intensive care) Work/study Time off work/study	At enrolment; optional update at any time; both previous and updated data retained in study database and date of update logged to permit changes to be tracked	15
Tracker	N/A	MG diagnosis and treatment Routine and rescue MG treatments during study Treatment dose (for corticosteroids only) Satisfaction with treatment during study Reasons for satisfaction level Reasons for stopping treatments during study Duration of rescue treatment during study MG-related healthcare resource use MG-related healthcare visits during study (eg, family doctor, specialist, hospital inpatient or outpatient visit, emergency department visit) Duration of any hospital stays for MG exacerbations during study Travel time to healthcare visits during study Adverse events Treatment-related adverse events experienced during study Severity of any adverse events Work/study Work/study time missed during study due to MG	Monthly 3-week completion window	10
EQ-5D-5L	Core	HRQoL	At enrolment then monthly; 1-week completion window	2.5
EQ-5D-5L bolt-ons		HRQoL	At enrolment then monthly; 1-week completion window	1
MG-ADL		MG symptoms	At enrolment then four times per 6 months; 2-week completion window	4
MG-QoL15r		HRQoL	At enrolment then once per 6 months; 3-week completion window	7.5
HADS		Psychological functioning	At enrolment then once per 6 months; 3-week completion window	7
HUI3		HRQoL	At enrolment then once per 12 months; 3-week completion window	4
COVID-19 survey		Impact of COVID-19 outbreak	At enrolment then once per month; 3-week completion window	6
PROMIS dyspnoea characteristics	Opt-in	Shortness of breath	At enrolment then once per 6 months; 3-week completion window	2.5
FACIT-Fatigue		Fatigue	At enrolment then once per 6 months; 3-week completion window	7.5
PROMIS Sleep Disturbance short form 6a		Sleep quality	At enrolment then once per 6 months; 3-week completion window	3

FACIT, Functional Assessment of Chronic Illness Therapy; HADS, Hospital Anxiety and Depression Scale; HRQoL, health-related quality of life; HUI3, Health Utilities Index III; MG, myasthenia gravis; MG-ADL, Myasthenia Gravis Activities of Daily Living; MGFA, Myasthenia Gravis Foundation of America; MG-QoL15r, Myasthenia Gravis Quality of Life 15-item revised scale; N/A, not applicable; NHS, National Health Service; PROMIS, Patient-Reported Outcomes Measurement Information System.