At the close of ACT I the IFAA team will report all findings – including successes & failures of having patients in leadership roles, recommended revisions to retest procedures, & hypothesize how patient inclusion could lead to time & budget savings. It will also conclude ways patients, industry, & researchers visualize productive partnerships & will propose an expansion to test new collaboration models for the early drug development environment ( a focus of ACT) and will expand in 2017 to include Pre-Clinical through Clinical Trial phases, working towards identifying existing gaps where patient input could produce value.
The A Community Team (ACT): Redefining Research project was one of three innovation in research grant winners – and the only immunology winner - in Celgene’s 2015 Innovation Impact Awards. The initial planning project aimed to test & facilitate innovative collaboration strategies between patients, researchers & industry to improve treatment outcomes and better utilize research dollars.
The project centered on engaging a larger, more realistic sample of patients – instead of only including the typical patient advocate usually “at the table”, and evaluating methods that put patients in leadership roles with research experts as the advisors. While the initial intent was to focus on enhancing collaboration in early drug development, non-pharmacologic research was studied due to its’ historical relevance to original engagement methods and a strong patient-reported desire to utilize both pharmacologic and non-pharmacologic therapies in disease management.
Patients involved (leading & as Hub participants) were diagnosed with Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS) and/or Axial Spondyloarthropathy (axSpA). However, as the project continues (ACT II) it will expand to also include patients diagnosed with Rheumatoid Arthritis (RA) and/or Systemic Lupus Erythematosus (SLE).
ACT II expansion will include:
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