A recap…
Sponsored by the Parkinson’s Foundation and Fresco Parkinson’s Institute, a first-of-its-kind World Summit on Parkinson’s Disease was held in Fiesole, Italy, bringing together 26 top experts from 11 different countries together to focus on the growing crisis affecting millions of people worldwide. Also included were medical professionals from organizations such as the Michael J. Fox Foundation, the World Health Organization, Parkinson’s UK, and several universities, including Dr. Michael Okun of the University of Florida, the summit facilitator.
For nearly two days, the focus of the event was focused on the latest trends in Parkinson’s disease, including the growing number of Parkinson’s cases worldwide, which are expected to reach 25 million by 2050. Dr. Okun, in his opening dialogue, also highlighted that Parkinson’s is growing faster in areas of more poverty and fewer resources to solid health care, little to no access to neurologists, medications like Levodopa, and caregiver support.
Dr. Okun also spoke on the emergence of integrated care models to improve multidisciplinary management. These include: A support base group of people, such as a movement disorders neurologist, PD nurse, social worker, pharmacist, and mental health professionals, all communicating to support a patient’s needs.
He also spoke about the advent of new technologies, such as wearables and clinical-grade home monitoring systems, for symptom monitoring and patient support, including smartwatches and multisensor kits that quantify tremor, bradykinesia, dyskinesia, gait/freezing, and sleep, turning these into clinician-friendly reports and AI-assisted assessment tools.
image: Mantri, S., Ghilardi, M.F., Lessard, N. et al. Proceedings of the world summit on parkinson’s disease.
A Parkinson’s Disease Registry
Attendees from the conference also discussed building national Parkinson’s Disease registries. Several advantages of having a database would go a long way to:
Being able to track trends in the population and in the disease itself by sex, race, age, ethnicity, and geography, and to support resource planning. This would also make it easier to ensure the appropriate number of specialists, rehab services, and medications like levodopa, as well as financial budgets based on where patients actually live and what resources are needed in a given area. This would also allow for faster and fairer access to care by identifying long wait-time hotspots and areas where treatment isn’t as readily available as in other places, and by providing more caregiver resources.
Recommendations and Next Steps
Having a registry would enable researchers and clinicians to identify disease trends in a given area and develop targeted medications or treatments. This would also allow for specific environmental causes to be identified, such as pesticides and other chemicals used in a given area, which may be contributing to the rise of the disease in places that historically did not.
Parkinson’s Care Landscape: Define and implement global minimum standards of care to ensure every person with Parkinson’s has access to a basic level of treatment and support, no matter where they live. This includes making essential medications (like levodopa) and therapies available and affordable.
Expand support for caregiver education and resources so that care partners are not overlooked in Parkinson’s care plans. Caregivers for Parkinson’s or other diseases like Alzheimer’s are usually on call 24 hours a day to see to the needs of patients, especially as disease progression and/or age, or both, whether they are a spouse, family member, or someone who has been brought in to help. Providing additional resources with assistance from state, federal, or local government, such as tax breaks for families or additional medical benefits, would go a long way toward easing the burden.
image: Mantri, S., Ghilardi, M.F., Lessard, N. et al. Proceedings of the world summit on parkinson’s disease.
Invest in workforce training by upskilling primary care doctors, nurses, and allied health workers in Parkinson’s management, and expand community health worker models to extend care reach. These steps will help build a more robust, accessible PD care infrastructure globally.
Another focus of the conference was the use of artificial intelligence, digital health, and personalized medicine. Discussed was the concept of developing ethical guidelines for the use of AI with patient advocates, clinicians, and technology experts in order to set standards for safety, equity, and privacy as new tools emerge, and to develop pilot programs to test scalable AI solutions for real-world Parkinson’s care, such as apps for symptom monitoring using AI to measure the impact of the disease it may be having on a patient.
The Summit recommended working with tech companies and innovators to ensure that their products align with healthcare needs and ethical norms, by proactively shaping the face of the digital healthcare landscape while protecting investors in the technology.
There is more about what happened and you can read about this historic event and find out what went on here on Nature Portfolio’ npj Parkinson’s Disease website.
WPC 2026
The World Parkinson’s Congress will be held in Phoenix, Arizona, at the Phoenix Convention Center, Sunday, May 24-Wednesday, May 27, this event brings together people from every side of the disease, scientists, doctors, caregivers, and those living with Parkinson’s themselves. There will be booths, art shows, short films, lectures and round table discussions, and musical performances and more. You can visit their website for more information about the event here.
