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World Parkinson’s Day: Why the urgency for innovation grows greater every year.

Posted by
Thomas Morel, Patient-Centered Outcomes Research


As we mark another World Parkinson’s Day, my experience in patient-centered research has taught me one thing: the urgency for innovation in this disease area grows greater every year.

The vision of the Parkinson’s Community is to reach the goal of disease modification – to alter the course of Parkinson’s using interventions that target the underlying cause of disease. However, for me, the term ‘disease modification’ can be a bit of a banana skin, likely to trip us up, and raise more questions than it answers. People with Parkinson’s currently rely on symptomatic treatments, interventions that were assessed in late-stage Parkinson’s with established outcome measures, such as the MDS-Unified Parkinson's Disease Rating Scale (MDS-UPDRS). In contrast, disease modification will require early intervention in people with early-stage Parkinson’s, who experience a variety of motor and non-motor symptoms that cannot be assessed in a sufficient granular way using existing outcome measures. This, in a field without valid biomarkers and where even the definition of early-stage Parkinson’s disease can be unclear! 

Our recent collaboration with people with Parkinson’s to co-create patient-reported outcomes (PROs) sought to answer some of these questions. We worked collaboratively with people living with Parkinson’s as joint investigators alongside clinical, regulatory, and outcome measurements experts. The group was involved across all phases of research; firstly, identifying the symptoms that are cardinal and important to the experience of living with early-stage Parkinson’s, and latterly, in the development of PRO instruments to better assess these symptoms. People with Parkinson’s informed every stage of our program, from qualitative study protocol design, conceptual model development, and subsequent co-creation of two PRO instruments.  

This collaboration confirmed two important theories for me; firstly, the perspectives of people living with Parkinson’s are invaluable in research. Secondly, for the kind of deep, co-creation relationships needed to understand and fight this disease, it’s essential to foster a culture of collaboration, trust, and respect with people living with Parkinson’s.  

As a disease area, Parkinson’s has a lot of catching up to do. For me, we will continue to fail as an industry if we continue to rely on legacy measures of treatment success that are not fit for purpose. If we continue to view Parkinson’s as simply a movement disorder, and if we think of people living with this condition as an afterthought in our research journey. Patient experiences in early-stage Parkinson’s are complex and wide-ranging, currently available outcome measures do not capture this and new, innovative approaches are urgently required. I can only commend Critical Path Parkinson’s pre-competitive collaboration initiative in this regard to address this community-level unmet need on outcomes measures and clinical study endpoints to accelerate drug development in Parkinson’s.  

My hope for the years ahead is that we’ll get that much closer to the goal of really tackling the underlying cause of this disease, working with people with Parkinson’s on a solution that improves their lives now and in the future.

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