Creating & Managing Data Delivery Lists
Data delivery lists associate a set of patients or accession numbers with a compliance document such as an IRB number for your research study. If you already use STARR Tools's Cohort Discovery and Chart Review tools, a cohort identified by cohort discovery and used in chart review may be used as a list in the Data Delivery tool.
Unlike the Chart Review tool, Data Delivery allows you to separately manage your study group and the associated clinical data. This allows you use the same list of patients or identifiers with different data models and delivery destinations.
Creating a List
To get started, first create a new list of patients or accession numbers for your study. There are two ways to navigate to the "Lists" page; one is to click the "Lists" link in the "Quick Links" section of the Dashboard. The other is to navigate to "Lists" in the navbar across the top of the page. This leads you to the Lists Management page.
Once there, click the "New List" button on right side of the page.
Step 1 - Data Privacy and Compliance
The first question you are asked when creating a new list is about Data Compliance and Privacy. In order to use STARR Tools Data Delivery you must either have a valid IRB with associated Data Privacy Attestation (DPA), or a stand-alone DPA (for pre-IRB investigations, QI/QA efforts, or education).
Your available compliance documents are listed in the dropdown. Select the appropriate one before continuing. If you don't see an IRB or DPA you were expecting, select "Help! I don't see my IRB or DPA". This will display a list of expired or invalid IRBs and DPAs. It will also provide a link to the "Compliance" page which will have the full list of all the compliance documentation recognized by STARR as yours, along with helpful links to the STARR Tools compliance process.
Step 2 - Define a List
After giving your list a short descriptive name, and optionally adding a detailed description, you must specify the sources for your list.
There are a variety of options available to define your list, including uploading MRNs, uploading DICOM file accession numbers, referencing a cohort of patients saved for Chart Review in STARR Tools, or referencing a list previously defined in Data Delivery.
If this is your first time creating a list, you will see there are no available options if you select Data Delivery as a source, but once you save your first list, it will become available for use in defining subsequent lists related to the same IRB/DPA.
Once you have selected the source type, you will be prompted to complete the definition based on your selection.
If you choose to upload MRNs or DICOM file accession numbers, upload a .csv or .txt file formatted as single column, one identifier per line. The file may have an optional header row. Uploaded identifiers will be validated when your list is saved. Accession file uploads will also give you the opportunity to check details associated with the accession number. Note that accession number file uploads may be used for DICOM images or as a list of patients for EMR data. If a list contains both patient sources (MRN upload, Chart Review, or Data Delivery lists of patients) and DICOM sources, the list will only be useable for EMR extracts.
If you instead chose either Chart Review Tool or Data Delivery, you are given a dropdown list of previously defined cohorts or named lists associated with your IRB or DPA. Select one from the dropdown before continuing.
Step 3 (Optional) - Multiple Sources for a List
You can of course just stop at one source, but if you choose to add a second source to your list definition, you must specify how the lists will be combined. You have three options: union, intersect, and minus.
Union creates a de-duplicated cohort that includes all patient identifiers referenced in all specified sources. Note that if multiple sources reference the same study subject, the final cohort will be slightly smaller than the sum of the sizes of the originals, due to the de-duplication step.
Intersect creates a list consisting only of patients referenced in all the specified sources.
Minus takes the first source as a starting point, then removes patients specified by all subsequent sources. This effectively lets you edit an existing cohort, removing unwanted entries.
Step 4 - Save and Create an Extract
Click the "Save" or "Save and Create Extract" button to save the list. Once "Save" is clicked, all of the sources will be checked for valid identifiers. MRNs or accession numbers that are not recognized during save will be displayed. These identifiers are not included in the saved list. You can optionally save these invalid IDs to your clipboard for investigation.
If the list includes very large uploaded files, the browser may time out before identifier validation and save is complete. If that happens, processing will still continue, and you will need to check the List Management page to see if the list has finished being saved. When the list save is complete, the number of records in the list should show a non-zero value.
In lieu of uploading large lists, you may want to create create smaller sub-lists which can be combine into one large list for data extraction, or extracted separately.
If you chose the "Save and Create Extract" option, the "New Extracts" page will automatically be loaded after saving is complete. Otherwise, you will be rerouted to the Lists Management page.
Managing Lists
All of the lists created by you, as well as those created by collaborators on your IRBs and DPAs are listed on the Lists Management Page. From this page, you can search your previously created lists, edit them, request data for them, or delete them. You can also created new lists from this page, as described in Creating a List.
Lists Summary Table
Lists are ordered by descending creation date by default, however the table can be sorted by list ids, names or IRB/DPAs. The search box allows you to filter the lists table by keywords.
Sources
Each list displays its data sources and how they are combined. In the example shown above, the cohort is a union of three different types of data sources, as denoted by the following:
Represents a previously saved STARR Data Delivery identifier list
Represents a cohort defined by STARR Chart Review
Represents an uploaded file of MRNs
Represents an uploaded file of DICOM Accession Numbers
IRB/DPA
Click on the link in the IRB/DPA column to display a popup summarizing the data access permissions. The "More Information" link goes to the Compliance page where you can find descriptions of what the data access settings mean and what to do if you are missing some permissions.
Actions
Edit the list
Define a data extract with this list
Delete the list