TY - JOUR
T1 - MDS PD e-Diary
T2 - A New Patient-Centered Digital Tool in Development for People with Parkinson's Disease
AU - the MDSe-Diary Working Group
AU - Rábano-Suárez, Pablo
AU - Monje, Mariana H.G.
AU - Vizcarra, Joaquín A.
AU - Paul, Serene S.
AU - Avión, Sabela
AU - Morse, Michael
AU - Skorvanek, Matej
AU - Tosin, Michelle H.S.
AU - Fuller, Rebecca L.M.
AU - Turner, Travis H.
AU - Dekker, Marieke C.J.
AU - Hall, Deborah A.
AU - Bergmann, Ken
AU - Cedarbaum, Jesse M.
AU - Maetzler, Walter
AU - Espay, Alberto J.
AU - Martínez-Martín, Pablo
AU - Stebbins, Glenn T.
AU - Mestre, Tiago A.
AU - Sánchez-Ferro, Álvaro
AU - Stebbins, Glenn T.
AU - Martínez-Martín, Pablo
AU - Mestre, Tiago A.
AU - Espay, Alberto J.
AU - Maetzler, Walter
AU - Hall, Deborah A.
AU - Skorvanek, Matej
AU - Tosin, Michelle H.S.
AU - Fuller, Rebecca L.M.
AU - Turner, Travis H.
AU - Dekker, Marieke C.J.
AU - Martínez, Sabela Avión
AU - Morse, Michael
AU - Cedarbaum, Jesse M.
AU - Paul, Serene S.
AU - Bergmann, Ken
AU - Vizcarra, Joaquín A.
AU - González-Monje, Mariana Hernández
AU - Rábano-Suárez, Pablo
AU - Sánchez-Ferro, Álvaro
N1 - Publisher Copyright:
© 2025 International Parkinson and Movement Disorder Society.
PY - 2026/4
Y1 - 2026/4
N2 - 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.
AB - 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.
KW - Parkinson's disease
KW - activities of daily living
KW - electronic data processing
KW - mobile applications
KW - signs and symptoms
UR - https://www.scopus.com/pages/publications/105035641940
U2 - 10.1002/mdc3.70305
DO - 10.1002/mdc3.70305
M3 - Article
AN - SCOPUS:105035641940
SN - 2330-1619
VL - 13
SP - 1020
EP - 1025
JO - Movement Disorders Clinical Practice
JF - Movement Disorders Clinical Practice
IS - 4
ER -