Instructions for mHealth Data Access Requests

Audience: Sage ACT

Table of Contents:

Current mHealth Datasets available 

• mPower (syn4993293)

  • Demographics, Memory, Tapping, Voice, Walking 

  • Require Additional Steps: MDS-UPDRS survey data, PDQ-8 survey data

• Mole Mapper (syn5576734)

  • Baseline demographics survey, follow-up survey data, mole removal indicator, mole measurements

  • Require Additional Steps: mole images

• mHealth Asthma Study (syn8361748)

  • Demographics, your asthma, medical history, asthma medication, asthma history, about you, daily prompt, weekly prompt, EQ5D, milestone, 

  • Other data: participant 3 digit zip 

• ElevateMS (syn21140362) 

• SleepHealth Public Researcher Portal (syn22264395)

Instructions for Reviewing and Approving mHealth Data Access Requests

• Check the Data Access Submission Dashboard: https://www.synapse.org/#!ACTDataAccessSubmissionDashboard:default  

• Click the “Review Requests” button

• For the Intended Data Use Statement, the requestor should have answered the following questions in 1-3 paragraphs:

  • What do you want to do?

  • Why are you doing it?

  • How do you want to do it?

  • Your Intended Data Use statement should include your overarching research goal, your main testable hypothesis (what you expect to determine with the proposed research), and how you will proceed. Your research may be strictly hypothesis-driven and seek to test several elements of one general hypothesis or you may be seeking to develop a critical tool or technique. No matter your planned approach, please keep your wording simple, relevant, and to the point.

• Click either:

  • Approve: The user will automatically receive an email stating they now have access to the dataset

  • Reject: Fill in the reason for the rejection in the text field and click “send”

Data Requiring Additional Steps for Access

• mPower 

  • MDS-UPDRS Survey Data - the user will need to request a Synapse Token

    • Direct the user to the following page to request a token: https://www.synapse.org/#!Synapse:syn4993293/wiki/390373  

  • PDQ-8 Survey data - the user will need to request a Synapse Token

    • Direct the user to the following page to request a token: https://www.synapse.org/#!Synapse:syn4993293/wiki/390374  

  • Full instructions are available here: https://www.synapse.org/#!Synapse:syn4993293/wiki/247860

•  Mole Mapper

  • Mole Images - the user must also upload an IRB approval document to access the mole image data as part of their data access request

  • For more info: https://www.synapse.org/#!Synapse:syn5576734/wiki/391119

• ElevateMS 

  • User must become a Synapse Certified User with a validated user profile