Custom Data Request

World icon with gearsIf your data needs are too complex for our self-serve tools, we can pull a custom data set for you – to be delivered once, or on a scheduled, ongoing basis. 

Before you begin, you will need the following items to complete your request:

  • IRB Approval and HUM Number, if applicable
  • PI uniqname and study team members who are permitted to receive the data
  • List of data domains or specific variable of interest

Steps to Request Data

  1. Click here to launch the Data Office Customer Portal.

  2. Be sure to fill out all required fields; you cannot submit or save a request once you have started it.

          The form will ask for the following:

          Study Information

         This is the research study and team information relating to this request:                                                                     

  • Study ID (HUM#) and Title
  • PI name and uniqname
  • PI Department, Division, School/College and Center/Institute, as appropriate
  • Contact name, phone and email (the primary contact person with whom the Data Office will work concerning your request).

         Data Type Information

  • The goal of the request
  • The type of data requested (Full PHI, de-identified, etc.) and delivery schedule
  • Contract or other agreement information
  • Data sharing information

         Data Storage Information                                                                    

  • The name and uniqname of the person who will receive the data from the Data Office
  • The format you want the data set delivered in (CSV, Excel, etc.)
  • The way you want data delivered (MiShare, direct to server/EDC)
  • Your data storage information (data path and physical location) Example: S:\core07t2\intmed_shared\mend\restricted

     3. Once the request is submitted, a representative of Data Office will be in contact if more information is needed (e.g. list of patients as pre-defined cohort).

Recharge information

  • To better align staffing with demand, a recharge rate of $60/hour will be implemented for all custom data requests that require effort from the Data Office to extract or manage data for your project.
  • Shortcodes are preferred over Fund Code, Dept ID, Program Code and Class.
  • If you use a shortcode, you do NOT need to enter the rest of the recharge information.
  • A shortcode is required to submit your data request so that we have the appropriate information on file for our finance department to process payment (if applicable).
  • If recharge costs apply to your request, you will receive an estimate of charges that will require PI approval.
  • Data extraction will NOT begin until any estimate has been approved.
  • Recharge costs will NOT exceed the approved estimate, even if actual hours of effort exceed those in the estimate (assuming no major changes to the request were made after the estimate was approved.)
  • The shortcode will NOT be charged until you have approved the initial cost estimate.
  • Your shortcode will be billed monthly for the hours logged once data extraction starts

Custom Data Request FAQ

How do I request a cost estimate?

Every Custom Data Request goes through a cost estimate review. You can submit a Custom Data Request and include both the cohort definition and data elements of interest. You will receive an automated message with the cost estimate for you to approve. Data extraction and invoicing will only happen if you approve the estimate.

How do I request an in-person consultation?

You can request an in-person consultation via the Data Office Customer Portal or by giving us a call at (734) 615-2100. Consultations are free of charge.

What are the differences between data types?

  • Full PHI Data: all patient identifiers including MRN, names, full addresses and full dates.
  • Limited PHI Data: includes full dates, no full addresses (except for city, state or zip code), no patient identifiers
  • De-Identified Data: no patient identifiers, and only year

How do I check the progress on my Clinical Data Request?

Once you have submitted your Data Request with all the required documentation, you can follow its progress by returning to the Data Request Summary Page, and viewing the status of the request.

These are the statuses you may see, along with their description: 

table

You may also see a note displayed in the Request Summary pane. These notes may inform you of action you need to take to ensure your request is processed in the shortest time possible.

If recharge costs apply to your request, you will receive an estimate of charges via email shortly after you submit the request. Data extraction will not begin until any estimate has been approved by you. Recharge costs will not exceed the approved estimate, even if actual hours of effort exceed those in the estimate (assuming no major changes to the request were made after the estimate was approved).

How do I download my Clinical Data Set?

We are able accommodate a few different secure delivery methods, and our team will, in collaboration with HITS, work with you during the initial discussion on the delivery method that meets your needs, whether it’s via MiShare, or directly to your Turbo directory or Dropbox. For large and/or recurring datasets, we are also able to set up a secure automated transfer, or deliver it as a relational database.

If data is delivered to you using MiShare, please keep in mind that MiShare will only hold your data for five (5) days before it is automatically deleted, so it's important that you download your data as soon as possible after you receive notification your data is ready. More information about MiShare can be found here.

If you are requesting only a document review (e.g., Data Sharing Agreement), or have requested aggregate counts, those communications will most often be done via email.

It is important to note:

  • Once you have been notified that your data set is ready, the Data Office will allow up to two weeks for you to approve and accept the data as delivered.
  • If there are minor changes required to the data to meet your needs, please communicate those changes before the two weeks have expired. If the Data office doesn't hear from you in that time, we will assume that the data is acceptable to you.
  • Major changes to the data set may require a new recharge estimate for your request.
  • Please be aware that you are expected to observe the U-M Institutional Data Resource Management Policy in regards to managing your data set once you have received it.

Questions?

Contact us or call (734) 615-2100 

North Campus Research Complex, Building 400, 1600 Huron Parkway, Ann Arbor, MI 48105

A list of Data Office contacts is available in the Personnel Directory