A Community Team (ACT): Patients, Nonprofits, Researchers, Industry Collaboration

IFAA’s award winning patient-led research project.

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.   “ACT” aims to develop collaborative strategies between researchers, industry, and patients that can lead to improved treatment outcomes and a better use of research dollars.  The initial planning project, which launched in 2016, focused on understanding patient treatment decision drivers, studying existing R & D processes which included:

  • Investigating current researcher-reported barriers and benefits to patient research participation.
  • Testing various communication platforms that could elevate patient engagement in the research process.
  • Including a larger, more inclusive sample of patients – instead of only including the typical patient advocate – and evaluated the value of patient leadership as part of the research team.
  • Investigate potential pros and cons of using patient leaders in Research & Development phases of a project, with expert advisors in place to help with the design and authenticity of the research.

Patients involved (leading & as Hub participants) were diagnosed with PsA, AS/axSpA, and/or Undifferentiated Spondyloarthropathy).  However, as the project continues it will expand to also include patients diagnosed with Rheumatoid Arthritis and/or Systemic Lupus Erythematosus.

The findings have been groundbreaking – and will be published in April of 2017 so stay tuned!

ACT will expand in 2017 (ACT II) to include Pre-Clinical through Clinical Trial phases, working towards identifying existing gaps where patient

input could produce value and will unite nonprofits, researchers, industry, CRO’s, and other stakeholders globally to track existing efforts in patient-research partnerships & discuss future advancement of this level of participation. IFAA will also be partnering with the National Data Bank for Rheumatic Diseases (NDB), who will be designing an ACT database to be stored at the NDB.

If you are a patient diagnosed with Rheumatoid Arthritis, Ankylosing/Axial Spondylitis, Psoriatic Arthritis, and/or Systemic Lupus Erythematosus and would like to learn how to get involved in ACT II, let us know!

Author: IFAA Team

I am the CEO of IFAA, using my former experience in business development, project management, and education - in conjunction with being a patient myself - to lead our team of passionate volunteers & contractors as we identify community problems and then develop & implement solutions.

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