Earlier this year, members of the Atuka team were struck by a presentation from Peter DiBiaso at the 13th Annual Alzheimer’s and Parkinson’s Drug Development Summit in Boston. Peter’s perspective was compelling not only for its scientific depth—he’s worked in drug development for over 30 years—but also for its personal resonance. As one of the 10–20% of people with Parkinson’s who are diagnosed before the age of 50, his insights are especially unique.
Intrigued by his talk, members of our scientific team recently had a wide-ranging online conversation with Peter, who was at his home in Paris. The focus: how the field can better integrate patient involvement across the entire drug discovery and development lifecycle—not as a symbolic gesture, but as a fundamental shift in how research is designed and conducted.
Peter spoke insightfully about the evolution of patient engagement in Parkinson’s research. Encouragingly, he sees the field as moving away from what he described as tokenistic “checkbox” efforts toward deeper, earlier integration of the patient perspective. But the shift is only just beginning. There is more to be done in understanding and foregrounding what patients truly need.
“There’s a role for the patient to play in every major milestone in development,” Peter said. “It’s not just about a one-time visit. It’s actually engaging with these patients—as well as their caregivers. Caregivers are such a big piece of the dynamic of patient research, and the work that’s being done, particularly in Parkinson’s disease, because it’s been such a challenge in terms of understanding the patient burden in a way that influences how you’re designing the protocols, or working through the clinical phase in terms of the engagement requirements on the patient side. There’s a huge community element here as well.”
We also discussed the tension between symptomatic versus disease-modifying research, and Peter pointed to patients’ challenges with cognition, mental health, and suicide ideation as critically underexplored areas. “I was part of a Lancet article published last year on some of the clinical staging of disease,” he said, “and it’s amazing that up until this point there really wasn’t any kind of universally accepted clinical staging to identify these patients.” Though progress is being made, “there still just isn’t that level of treatment patients are hoping for.”
He also pointed to sleep disorders as an area that remains overlooked in Parkinson’s research—something he didn’t fully appreciate earlier in his own diagnosis but does now.
These are issues that aren’t always in the research community’s crosshairs. Perhaps they should be in ours.
When asked whether patients are more positive about the future today than a decade ago, Peter offered a measured response.
“Yes and no,” he said. “If you look back in Parkinson’s disease research over the last 20 years, every year there’s a proclamation that in five years there’s going to be a cure, and we’re going to make advancements in this and that. Then two or three years go by and it’s, we’re going to get there in another five years.”
“With all the efforts that have been put in, we still haven’t seen real significant movement. There’s been a lot of great results, and everyone is excited about the biomarker research, and we’re starting to see some dividends from that, but it’s just not soon enough.”
One of the strategies Peter argued for was stronger collaboration across the broader Parkinson’s community—patients, advocates, academia, and industry working in closer alignment. He encouraged Atuka to consider how it might take a more active leadership role in facilitating that alignment.
It was a rich and inspiring exchange—one that clarified both the urgency and the opportunity in front of us. Atuka will continue listening—not only to the science, but to the people most affected by it—and we recognize that listening must lead to action.
As global preclinical leaders, we have a unique responsibility not just to support drug discovery, but to help shape its direction. Patient-identified concerns like suicidal ideation, dyskinesia, and cognitive decline remain underprioritized—not because the science isn’t there, but because the systems to support it often aren’t. In the case of dyskinesia, the models exist and are well validated. For cognition, high face validity models are available. What’s needed now is not invention, but adoption. So we’re asking: what’s stopping us?
Where robust models don’t yet exist—like in suicidal ideation—we see it as our role to help build them. And across all indications, we’re committed to making these platforms more accessible, fit-for-purpose, and ready for drug development. That’s the work ahead.
In response to this conversation, Atuka is actively exploring how we can:
- Contribute to the design of collaborative working groups that include patient voices earlier in the research cycle—helping define which endpoints matter and how they might be modeled.
- Develop new preclinical models that reflect patient-prioritized outcomes, beginning with suicidal ideation and sleep disorders in Parkinson’s disease.
- Advocate within our partner networks for more balanced investment across symptomatic and disease-modifying research—ensuring that near-term quality-of-life issues aren’t sidelined.
These are early steps, but they’re essential. As we work towards these goals, we would love to hear recommendations for specific groups to engage with. Leadership in this space means building what doesn’t yet exist—and doing it in dialogue with those who need it most.