A new approach to protect young hearts from lupus complications

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria for EHR Data Collection: * ICD-10-CM or SNOMED-CT diagnosis code for SLE * Completed a pediatric rheumatology outpatient clinical visit at a participating implementation site within 12 months of each data collection timepoint Inclusion Criteria for the Patient Survey Group: * Diagnosis of childhood-onset Systemic Lupus Erythematosus (cSLE) * Must have had a pediatric rheumatology clinical visit at a participating implementation site within 12 months of each data collection timepoint * Age 12 years or older at enrollment Inclusion Criteria for the Caregiver Survey Group: * Individuals at least 18 years of age * Parent or guardian of a child with cSLE who is followed by a care team at a participating site Inclusion Criteria for the Lupus Care Team Member Survey Group: * Individuals at least 18 years of age * Health care team members within a pediatric subspecialty that manages patients with cSLE at a participating site Inclusion Criteria for the Patient Interview Group: * Diagnosis of childhood-onset Systemic Lupus Erythematosus (cSLE) * Completed a clinical visit in the participating site's outpatient rheumatology clinic within the 12 months prior to enrollment * Age 12 years or older at enrollment * Able to provide verbal assent if below age 18 years of age or verbal consent if age 18 years and older. For minors, verbal parental/guardian permission (informed consent) is required. * Have access to a device with audio or audiovisual conferencing capabilities Inclusion Criteria for the Caregiver Interview Group: * Individuals 18 years old or older at enrollment * Parent or guardian of a child with cSLE who is followed by a care team at a participating pediatric rheumatology site and has completed a clinical visit within the 12 months prior to enrollment * Able to provide verbal informed consent prior to the interview * Have access to a device with audio or audiovisual conferencing capabilities Inclusion Criteria for the Lupus Care Team Member Interview Group: * Individuals ages 18 years of age or older at enrollment * Health care team members that are in a pediatric subspecialty clinic that manages patients with cSLE at a participating site * Able to provide verbal informed consent prior to the interview * Have access to a device with audio or audiovisual conferencing capabilities Exclusion Criteria for all Interview Groups: * Unable or without cognitive capacity to participate in an interview, as determined by the investigator(s). * No prospective interview participants will be excluded on the basis of sex, race, ethnicity, or language preference.