Miriam Grande is a Researcher at the Unidad de Innovación e Investigación at Asociación Parkinson Madrid (APM). She holds degrees in Physiotherapy and Psychology and has experience as a lecturer at the Complutense University of Madrid (UCM). Miriam has actively participated in several research projects with the association and has extensive training and expertise in Parkinson’s disease.
In the IDEA-FAST project, she serves as the principal investigator, focusing on patients with Parkinson’s disease across all aspects of the Clinical Observatory Study (COS), particularly in participant recruitment and conducting visits. She gave us her insights.
What is the IDEA-FAST project to you?
As a researcher, I’ve always been fascinated by how deeply symptoms like fatigue and sleep disorders affect our lives. These aren’t just minor inconveniences—they’re barriers to a full life. That’s why the IDEA-FAST project is so meaningful: it’s an observational study aiming to uncover how these symptoms manifest in neurodegenerative and immune-mediated inflammatory diseases.
The project uses wearable digital tools to measure fatigue and sleep disturbances with unmatched precision. For years, we relied on traditional questionnaires that only scratched the surface of what patients experience. IDEA-FAST gives us the opportunity to capture these symptoms as they happen, revolutionizing how we understand and eventually treat them.
How many participants are involved, and how is the recruitment going?
Our goal is ambitious: recruiting 2,000 participants across 24 European centres, including people with Parkinson’s disease, Inflammatory Bowel Disease, Rheumatoid Arthritis, Lupus, Sjögren’s Syndrome, Huntington’s Disease, and Healthy Volunteers.
At Parkinson Madrid, we’ve already met our target: We’ve recruited 70 Parkinson’s patients and 20 healthy volunteers. Seeing their enthusiasm and willingness to participate is both humbling and motivating. These are people who want to make a difference—not just for themselves but for future generations.
What challenges have you face in recruiting participants and keeping them engaged?
This study requires significant commitment from participants, and that was one of our biggest concerns. Over six months, they attend four visits, wear devices daily, and answer detailed questionnaires. It’s a lot to ask, especially since there’s no immediate benefit for them in terms of symptom improvement.
Participants are motivated by knowing their involvement matters. As a team, we work hard to make them feel supported—whether that’s through in-person meetings, phone calls, or simply being there to resolve any technical issues. Their dedication inspires us to push forward.
What do participants think of the digital devices?
I’m always eager to hear their feedback because it helps us improve. Most participants find the devices easy to use, but some have reported minor issues, like skin irritation or device attachment during warmer months. Surprisingly, the length of the questionnaires is a bigger concern for many, especially those with active daily schedules.
Still, the insights these tools provide are invaluable. Participants appreciate receiving personalized reports on their sleep and activity patterns. It’s a tangible way for them to see the impact of their efforts.
What impact do you hope IDEA-FAST will have?
This project is about more than just gathering data; it’s about changing lives. By developing precise, user-friendly digital tools, we can lay the groundwork for future clinical trials that offer real solutions to people facing these debilitating symptoms. There’s nothing more rewarding than knowing your work could lead to better treatments for millions of patients, especially those with Parkinson’s disease.
What’s next for IDEA-FAST?
By 2026, we’ll have analysed and published data from participants across Europe. It’s an exciting time, and I encourage everyone to follow our progress through the official website (www.idea-fast.eu) and social media. This is only the start of what we can achieve together.
