First off, let me tell you how EXCITED I am to be a part of this project! CEO of the International Foundation of Autoimmune Arthritis (IFAA), Tiffany Westrich-Robertson, reached out to me months ago about the project and I’m so pumped to finally hit the ground with recruiting patients.
IFAA submitted a project idea for the 2015 Celgene Innovation Impact Awards: Unleashing the Patient Voice in Research which was required to address a known community gap and present a new, innovative way to solve it.
IFAA then developed The A Community Team (ACT): Redefining Research, a multi-faceted, forward-thinking series of data collection models that will engage interaction with industry, researchers, & a global pool of patients to initiate discussions early in the drug discovery environment so that research ideas and dollars spent will better reflect patients’ needs. It also enables patients who are usually unable to participate in research discussions, due to disease limitations and/or the inability to travel, to contribute through a flexible virtual platform.
They chose this challenge because as patients, we know what’s been done, and as experts in problem solving, we know how to bring solutions to the next level. Their model will produce more robust data, better utilize research dollars on those innovations patients want, & find meaningful benefits that may be translated to a draft guidance for future FDA approval guidelines.
AND GUESS WHAT?! THEY WON!!!!
ACT is a pilot project for a larger initiative. This initial project will begin by working with a small group of autoimmune patients (125-175), diagnosed with Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), AND/OR radiographic or non-radiographic Axial Spondyloarthritis (axSpA/nr-axSpA)*.
This initial project will focus on both the ‘typical’ patient and the ‘atypical’ (or non-textbook patient, including those with co-morbidities) to establish a more robust patient model and better understanding of issues that occur in the drug development environment. Additionally, as we conduct this research we will track our methods; we will be creating a blueprint for expanded use within the research community, including mapping methods for researcher-patient collaboration. The level of robust data we have the potential to collect by re-configuring traditional data collection model is exciting!
Why Should You Care?
Because if you’ve been diagnosed with Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), AND/OR radiographic or non-radiographic Axial Spondyloarthritis (axSpA/nr-axSpA) you can apply to be apart of this ground breaking study. And the best part? It’ll all be done from the comforts of your own home!
Yup, that’s right folks . . . YOU can help change the future of healthcare RIGHT FROM YOUR OWN SOFA!
Right now the project is recruiting patients just like you! If you meet the qualifications (it is a research study after all!), then you’ll participate in discussions on a “Facebook like” platform to help drive the creation of surveys, data and eventually guidelines for standards of care. And what’s really cool is that once the data collection is done, you’ll actually be able to watch via web stream the data be presented to researchers and medical professionals in the healthcare industry! PATIENTS FOR THE WIN!
Soooooooooooo, What Are You Waiting For?
Head over the IFAA’s Autoimmune Community Team site to learn more and to sign up! There are only so many spots in the study, so make sure to sign up today to see if you qualify.
Participating in this study will not only help drive standards of care for PsA, AS, and axSpA/nr-axSpA, but will help create a blueprint for other disease states to conduct research including the patients in every step!
This is SO much bigger than the initial patient population they’re starting with.
Wishing You A Pain Free Day!
grab one of these photos and share the link!
Let’s start a chain reaction in the patient research/data collection space!