MyPD Study: co-design of an electronic diary application for people with Parkinson's disease

The MyPD study aims to understand how people with Parkinson’s perceive their disease, how they manage their health on a day-to-day basis and to what extent they use new technologies (e.g. computers, mobile phones, mobile applications, etc.) for healthcare purposes.

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, in the framework of this study, researchers are developing a new application to facilitate the patients’ involvement in their care. This electronic diary (eDiary) will enable patients to learn about their disease, track important health information and share this information with their treating physician.

The first step of the study is an online survey that takes 30 minutes to complete and is available in English, German and French. For the online survey, we are looking for:

1. People living with Parkinson’s disease
2. Informal caregivers of people with Parkinson’s (e.g. family members, friends, partners etc. who support this person in their daily life).

With your participation in this study, you will help us to:

• Gain insight into the routines of people with Parkinson’s, the disease management strategies they use and the support they receive daily from their family members, partners, and friends.
• Advance our knowledge about technologies currently used by people with Parkinson’s disease and help us design an eDiary application that could further support them.

• Are you a person living with Parkinson’s disease? Read more and start the survey
• Are you a family member, partner or friend supporting a person with Parkinson’s disease? Read more and start the survey

The MyPD study is organised under the framework of the National Centre of Excellence on Parkinson’s Disease (NCER-PD). It is funded by the Luxembourg National Research Fund (FNR) and has received ethical approval from the Comité National de Ethique de Recherche (CNER).