Table 3

Ranked solutions per pillar identified by Global Advisory Committee

Drug developmentClinical careAccess to care

  1. Simplify and standardise clinical trial outcome measures, including steroid-sparing as an outcome.

  2. Develop data sharing approaches related to biomarkers, clinical data and lab samples.

  3. Propel quality of life-driven studies (eg, fatigue).

  4. Increase participant representativeness in clinical trials (e.g., minority, paediatric and cutaneous lupus erythematosus).

  1. Define the lupus spectrum.

  2. Perform longitudinal studies of prognostic and diagnostic biomarkers.

  3. Drive clinical and lab-based measures for individualised treatments.

  4. Identify and support development of treatment adherence strategies that work for lupus and communicate them to patients and providers.

  1. Build the case for World Health Organisation (WHO) prioritisation of lupus.

  2. Develop standardised and specialised, expert-driven care pathways.

  3. Drive telehealth advances and reimbursement, and build on current infrastructures.

  4. Explore broader partnering.

  5. Leverage social media.

  6. Develop evidence base for interventions, including standardised endpoints/outcomes.

  7. Provide payor education and establish alignment.