Let’s develop together an electronic diary for people with Parkinson’s disease

While effective management of Parkinson's disease requires the contribution of many healthcare professionals (doctors, nurses, therapists) and the support of family and friends, it also requires the active participation of those affected. This is where new digital technologies can become very useful. Thus, a new study, called MyPD, aims to understand the individual needs of people with Parkinson's disease and use this knowledge to develop a new tool: an electronic diary (eDiary) application.

"We want to find out where people with Parkinson's disease and the people who help them in their daily lives see the greatest need for further information and support," explains study leader Dr Marijus Giraitis, clinician-scientist in the Digital Medicine group at the Luxembourg Institute of Health, the University of Luxembourg and the Centre Hospitalier de Luxembourg. "We also want to find out how recent technologies, like software, smartphones and mobile applications, are currently being used for healthcare purposes and which needs of patients and healthcare professionals need to be addressed to improve healthcare.

Led by Prof. Jochen Klucken, FNR PEARL Chair in Digital Medicine, the research team is actively seeking the support of the Parkinson's community in Luxembourg and the Greater Region. Participation in the MyPD Study is open to people living with Parkinson’s disease, their informal caregivers (e.g. family, partners, friends) and healthcare professionals.

Participation is easy and flexible: In a first stage, interested patients and caregivers can take part in a 30-minute online questionnaire from the comfort of their own home, in either English, French, or German.

Survey for patients Survey for informal caregivers

Depending on their preference and availability, participants, including healthcare professionals for the group workshops, can also choose to participate in the following steps of the MyPD study:

Face-to-face interviews: Participants share their experiences with the research team in a face-to-face interview that takes about one hour. We will delve deeper into the various aspects of Parkinson’s disease.
Group workshops: Participants meet other members of the Parkinson’s community and jointly create an eDiary application. These interactive hands-on sessions last up to two hours (including a break) and offer participants the opportunity to interact directly with the research team and learn more about how technology is created.

The results of the study will then be used to develop an effective and easy-to-use eDiary app, which will enable people with Parkinson's to learn more about their own disease, track important health information and share it with their healthcare team. "Our study provides a unique opportunity for people with Parkinson’s to be actively involved in the design of a new technology,” concludes Prof. Jochen Klucken. “Their participation and feedback is crucial to ensure that new tools meet the individual needs and preferences of the patients and their healthcare team - making a real difference in people’s lives."

For questions, please contact the MyPD study team at:

This email address is being protected from spambots. You need JavaScript enabled to view it.
+352 621 519 122 ( Mon - Fri. 08:00 - 17:00)

The MyPD study is funded by the Luxembourg National Research Fund (FNR). It has received ethical approval by the Comité National d’Éthique de Recherche (CNER).