Primary and secondary unmet scientific needs within systemic lupus erythematosus with regard to translational science, clinical science and therapeutic trials, and clinical care∗
| Primary unmet needs | Secondary unmet needs | |
| Translational/basic science | Better understanding of the role of T and B lymphocytes (and subsets), the epigenetic modification of various cell types (in connexion with environmental factors) and metabolic perturbations in the pathophysiology of disease Identification of factors that lead to tissue specificity of SLE disease manifestations Further development of longitudinal, clinically well-characterised cohorts (immunologically, genetically and metabolically) with appropriate imaging, tissue and fluid samples; improved data-sharing among investigators | The development of diagnostic tools to identify preclinical disease states Identification of contribution of genetic variants and soluble mediators to risk of disease Better understanding of the natural history of disease flares |
| Clinical science and therapeutic trials | Further refinement of clinical response measures/index Critical appraisal and potential revision of the current instruments to assess disease activity and treatment response Standardisation of a definition of disease remission Clinical trials that incorporate IFN signature and emphasise responder analyses Large pragmatic trials of existing and emerging therapies. These trials should focus also on prevention of disease in those identified to be at risk Small proof of mechanism trials for emerging therapies | Improved identification and targeting of the innate immune response Improved identification and use of biomarkers within clinical practice and trials Broaden membership of groups designing trials |
| Clinical care | Better characterise patient concerns (vs provider concerns) Optimisation of steroid-sparing approaches to treatment including the development of toxicity scoring systems, the development of sustained release or organ-targeted steroid preparations, and consideration of different ‘phases’ of steroid use Improved understanding of targeting specific therapies to specific disease clinical manifestations | Identification of socioeconomic factors that contribute to long-standing disease Establish patient support groups and guides/advocates to improve adherence to medical regimen Better understand cognitive dysfunction associated with disease and the development of a usable instrument to quantify in clinical practice |
*Sequence of needs within the table is random, and is not meant to imply order of importance.
IFN, inteferon; SLE, systemic lupus erythematosus.