PD Diary

October 2018

Dear MDS Colleagues,

While PD diaries have provided valuable information as outcome measures, and often primary endpoints, in clinical trials of symptomatic therapies over the past 20 years, the advent of new technologies has opened the opportunity to reassess the balance between the simplicity of available diaries, almost exclusively designed in paper format, and the need to capture a wider range of individualized motor, non-motor, and circadian complex fluctuations with greater accuracy as an electronic diary/tracker interface (e-diary).

With the aim of bringing the PD diary to the digital age, the MDS Technology Task Force and the MDS Rating Scales Program Electronic Development Ad-Hoc Committee brainstormed on a set of desirable characteristics and developmental steps for a technology-enhanced diary to serve the needs of both clinical trials and clinical practice. At the request of the Movement Disorders editors, such document is now available for public comment (See links below) as an opportunity for readers who are not Task force members to give feedback online and participate in shaping what the new tool should aim for. Comments and suggestions will be accepted through Wednesday, November 7.

The manuscript will be adapted according to comments and suggestions and all responses will documented online in what is to become “Supplementary Material 1”. The final product is expected to be published in Movement Disorders.

With gratitude for your efforts,

Alberto Espay, MD; Walter Maetzler, MD; and Álvaro Sánchez-Ferro, MD, on behalf of the MDS Technology Task Force and the MDS Rating Scales Program Electronic Development Ad-Hoc Committee. 



Related Documents

If you prefer to share edits on a Word document, please send them to Dr. Espay at alberto.espay@uc.edu or aespay@gmail.comComments and suggestions will be accepted through Wednesday, November 7.

 

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Recent Comments

Title:
Functional state as a marker of overall PD control
By:
Subramaniam Nagasayi
Comment:

As a geriatrician managing elderly PD patients it is challenging enough already. I focus on functional state (BADL and IADL) of patients as a guide to drug therapy.

Should we do e-diaries in all PD patients or only those the patient or the physician anticipate/report concerns? I am keenly looking forward to using the e-tool in my patients.

But physicians also need training in using it and explaining to patients and caregivers to make it successful and sustainable.

Title:
Suggestion for PD diary
By:
Michelle Tosin, RN, MSN, PhD student, Brazil.
Comment:

Congratulations to the authors and MDS for this initiative. The details of the suggestions were sent to the e-mail. Overall, my suggestions were related to:

- Selection and analysis of non-motor symptoms

- The correlation with the drug therapy (oral, pacht, infusional, DBS)

- The Impact of Motor and Non-Motor Symptoms on Functionality and QoL

- The incorporation of specialized professionals for the development of the training of the users of the app

- The definition of cognitive parameters that limit patients' use of the app and indicate their use by family members or caregivers

- The creation of a channel for fast and easy access to professional experts for solving users' queries

- The psychometric parameters to be analyzed both in the definition of the phenomena of interest and the non-motor scales that will support the determination of the symptoms

- The addition of electronic devices to measure non-motor symptoms (a challenge).

Title:
Therapeutics should be sex-adapted
By:
Hermona Soreq
Comment:

most of the drugs we use today, for PD and other diseases have only been tested in males for simplicity and saving reasons in pre-clinical studies. This goes on since the FDA requests comparison of new drugs to the older ones and those were only tested in males as well. This protocol must be changed as women may benefit from other drugs or dose-adapted strategies.

Title:
I am not a clinician and dare not tell others how to do their job...
By:
hermona soreq
Comment:

The differences between men and women with PD should be studied more carefully so that treatment and diagnosis can be improved.

Title:
Suggestion for evaluation of PD diary
By:
David L. Keller, MD
Comment:

I suggest that the PD diary be released as an application program ("app") for Android and / or the iPhone. This would allow evaluation in real-life situations and in real time.

Title:
MDS Japan
By:
Masahiro Nomoto
Comment:

It is a nice idea to set the diary MDS.

I am looking forward to hearing you on it.

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