Movement disorders clinical practice · 2025
MDS PD e-Diary: A New Patient-Centered Digital Tool in Development for People with Parkinson's Disease.
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Rábano-Suárez Pablo, Monje Mariana H G, Vizcarra Joaquín A, Paul Serene S, Avión Sabela, Morse Michael, Skorvanek Matej, Tosin Michelle H S, Fuller Rebecca L M, Turner Travis H, Dekker Marieke C J, Hall Deborah A, Bergmann Ken, Cedarbaum Jesse M, Maetzler Walter, Espay Alberto J, Martínez-Martín Pablo, Stebbins Glenn T, Mestre Tiago A, Sánchez-Ferro Álvaro, MDSe‐Diary Working Group
Аннотация
BACKGROUND: There is a need to better evaluate Parkinson's disease (PD) impact on daily lives of People with Parkinson's (PwP).
OBJECTIVES: To conceptualize a novel digital tool, the MDS PD e-Diary that has been commissioned by the International Parkinson's disease and Movement Disorders Society.
METHODS: Using a modified Delphi methodology, we sought consensus among key stakeholders (PwP, care partners, PD specialists, industry, regulatory representatives) through online questionnaires, focus groups, and a broad community survey.
RESULTS: The consensus resulted in a multiplatform patient-reported outcome tool to track PD progression. It includes an Item Bank of symptoms and activities featuring two interconnected user modes. The personal mode is a customizable self-tracking tool that allows data sharing with professionals to improve standard care. The research mode employs a predefined responsive item to enhance research and clinical trials.
CONCLUSION: The MDS PD e-Diary was designed to capture PD progression and its impact on PwP lives, potentially transforming research and clinical practice. Its further development and validation processes are underway.
OBJECTIVES: To conceptualize a novel digital tool, the MDS PD e-Diary that has been commissioned by the International Parkinson's disease and Movement Disorders Society.
METHODS: Using a modified Delphi methodology, we sought consensus among key stakeholders (PwP, care partners, PD specialists, industry, regulatory representatives) through online questionnaires, focus groups, and a broad community survey.
RESULTS: The consensus resulted in a multiplatform patient-reported outcome tool to track PD progression. It includes an Item Bank of symptoms and activities featuring two interconnected user modes. The personal mode is a customizable self-tracking tool that allows data sharing with professionals to improve standard care. The research mode employs a predefined responsive item to enhance research and clinical trials.
CONCLUSION: The MDS PD e-Diary was designed to capture PD progression and its impact on PwP lives, potentially transforming research and clinical practice. Its further development and validation processes are underway.