Table 1.

Examples of data elements collected by NARCOMS Registry ^a

Category	Specific elements
Sociodemographic information	Date of birth Gender Race/ethnicity Annual household income Highest level of education reached Marital status Health insurance status Employment status
Clinical characteristics/outcomes	Age at MS symptom onset Age at MS diagnosis Disability/symptom impact (measured using Patient-Determined Disease Steps and SymptoMScreen28 depending on year) Clinical course Relapses in past 6 months Comorbid conditions Health-related quality of life (measured using RAND-12 and Health Utilities Index–Mark III depending on year)
Health behaviors	Smoking Physical activity Height and weight
Health care services	Use of emergency departments Visits to health care providers Hospitalizations
Treatment	Use of disease-modifying therapies (name, period of use) Use of symptomatic therapies (not on every survey)
Special topicsb	Preferences regarding physician assistance in dying Bone health Diet Health literacy Use of assistive devices Health information sources Bowel and bladder function Trigeminal neuralgia Visual functioning Vertigo

Abbreviation: NARCOMS, North American Research Committee on Multiple Sclerosis.

^aMore information may be found at maelstrom-research.org/mica/individual-study/narcoms.

^bSelected examples.