Table 2

Top barriers by category listed with their respective weighted ranked scores

Drug developmentWeighted Prioritisation Score
Lack of biomarkers to predict response to drug in clinical trials6.614
Lack of user-friendly, sensitive and accurate outcome measures6.394
Flawed clinical trial design6.370
Challenges with collecting patient-reported and clinician-reported outcomes5.559
Lack of alignment between patients, providers and regulatory5.370
Challenges with attracting under-represented study populations5.173
Limited awareness of lupus among non-expert medical professionals3.370
Lack of attention to R&D paediatric issues3.173
Lack of classification criteria2.976
Clinical careWeighted Prioritisation Score
Lack of diagnostic, predictive and prognostic biomarkers for lupus7.294
Lack of treatment adherence6.717
Limited awareness and understanding of lupus among non-expert medical professionals5.800
Lack of clear risk factors that trigger lupus and lupus-like diseases (onset and flares)5.690
Inadequate understanding of benefit-risk trade-offs between physicians and patients5.103
Lack of attention to paediatric issues3.968
Lack of diagnostic criteria3.873
Access and valueWeighted Prioritisation Score
Barriers to effective management of lupus due to social determinants of care in predominantly lower socioeconomic status areas6.937
Lack of access to clinicians familiar with lupus6.873
Lack of access to medications either due to lack of coverage or added cost to patients6.492
Lack of understanding by government payers/insurers about lupus and the medications needed to treat the disease5.976
Lack of tools for collecting real world evidence4.089