Frequently Asked Questions
The Registry of Patient Registries (RoPR) is a repository of information about patient registries. As owned by the Agency for Healthcare Research and Quality, the RoPR is focused on, but not exclusive to, U.S.-based patient registries. For more information click here.
At the most basic level, a patient registry is a data collection tool or database which contains information about patients' medical conditions and/or treatments. Patient registries may be used for a variety of purposes including one or more of the following:
Text entered in the RoPR Search boxes will be searched for across the entire content of the available Registry Profiles, including pre-defined data elements like the Registry Classification options.
The Search boxes within the Home, Search and Structured Search tabs have type-ahead functionality which works on a single word. For example, entering dis will display values such as disease, diseases, disorder, discharge, etc. depending on the available content within the RoPR. Free-text searches function with or logic. A search for rare disease will produce results which include either rare or disease. Profiles matching both words will be ranked with higher relevancy in the search results.
The Search box in the AHRQ banner does not search for content within the RoPR. Instead, this field performs searches within the Agency for Healthcare Research and Quality's Web site.
Filters, available under the Search tab, allow users to search on specific data elements available within a Registry Profile. Each drop-down menu displays the available data elements for each section, along with a number that reflects the number of Registry Profiles with that data element selected.
Filtered searches function with and logic. A search for a registry that has (1) interest in being contacted and (2) a last updated date within the last year will produce results that contain both of these criteria.
Filtered searches can be combined with free-text searches under the Search tab.
Filters can also be applied for date ranges, for either First Received On or Last Updated On dates in MM DD YYY year format (e.g.;4 22 2012 for April 22 2012) . First Received On indicates the date the Registry Profile was initially posted to the RoPR; Last Updated indicates the date the Registry Profile was last modified.
Current Filter Selections, in the upper left corner of the Search tab, display all the filters criteria applied in the current search.
Filters can be removed by clicking the (x) next to each of the items listed under Current Selections. Click Clear All to remove all filter criteria. Any search term(s) entered in the Search box will be retained.
Selection values under the Structured Search tab function as described above for Filtered searches.
Free-text searching for specific fields allows for performing searches against only those fields for more precise results. Specific searchable fields include:
Definitions for the RoPR data elements are available by clicking the Data Field Help link, which is found at the bottom of the search pages or the Registry Profile. A Glossary of Terms, arranged by the data sections of a Registry Profile may be found here.
For RoPR registries entered through the ClinicalTrials.gov's Protocol Registration System (PRS) pathway:
For RoPR registries entered through self-registration on the RoPR:
A single Registry Profile may be converted to a PDF document for print-out, or exported to an XML format. Use the Export button in the bottom left corner of the Registry Profile and follow the prompts in your browser to generate the PDF or XML as appropriate for your system.
Multiple search results may also be exported to either CSV (comma-separated values), PDF or XML formats. Options will include the ability to export the top single profile, the top 10 records, or all of the results. On the results listing, use the Export button below the filters and follow the prompts in your browser to generate the CSV, PDF or XML as appropriate for your system.
To create a bookmark for a single Registry Profile, click the RoPR Record Permanent Link. This will open a stand-alone page which you can bookmark according to the type of browser you are using.
Click the History of Changes link at the top of a Registry Profile to open a new window which shows before-and-after modifications between different releases of Registry Profile.
If a Registry Profile has not been reviewed and updated to the RoPR search site within four years, it is considered to be archived.
Archived Registry Profiles are displayed by default on the RoPR search site. However, a selection option on the Search Web site allows for archived records to be hidden from search results.
There are two ways to update or list a new Registry Profile
The first option requires that a user has an account for the ClinicalTrials.gov's Protocol Registration System (PRS): https://register.clinicaltrials.gov/.
The record in PRS must be identified as a Patient Registry. From either the Patient Registry data section, or the Complete or Release actions, a link will be present to the RoPR Registration System (RRS). Click the link to open RRS for updates to the Registry Profile. Remember to post any updates to the ClinicalTrials.gov record as well.
The second option allows a user to self-register on the Registry of Patient Registries (RoPR) and enter all registry information manually. Once registered, a user can return to their "finder" page to add a new registry or update an existing registry.
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