What is the RoPR?

The Registry of Patient Registries (RoPR) is a repository of information about patient registries. As owned by the Agency for Health Care Research and Quality, the RoPR is focused on, but not exclusive to, U.S.-based patient registries. For more information click here.

What is a patient registry?

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:

• Research, especially to see what happens when a drug or device is wider use than a clinical study.
• Natural history of disease where information is collected on the progress of a disease in a patient population. Patient registries may focus on large-scale medical conditions like diabetes or rare diseases like cystic fibrosis.
• Post-marketing commitment. A patient registry may be used to collect post-marketing data when the Food and Drug Administration (FDA) asks a manufacturer to run additional studies after a drug or device has been made available to the public.
• Quality improvement programs used to discover and define more effective treatments for patients
• Certification for physicians to remain membership in a professional medical organization.

How do the Search boxes work?

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.

How do Filters work?

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 Classification selection of Disease/Disorder/Condition and a Geography selection of National will produce results that contain both of these criteria.

It is possible to add multiple values under the same section, for example searching by Classification selection of Disease/Disorder/Condition and applying a second Classification filter of Product, Drug.

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.

How does Structured Search work?

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:

• Registry Title
• RoPR ID
• NCT #
• Organization

What do the fields on the Registry Profile mean?

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.

What is the relationship between ClinicalTrials.gov records and RoPR records?

Many data elements pertaining to a patient registry are currently available on the ClinicalTrials.gov Web site. To reduce redundancy, such data elements are not included in the RoPR. Examples include start and end dates, eligibility criteria and recruitment status.

In order for a Patient Registry Profile to exist within the RoPR, a corresponding record must be entered in ClinicalTrials.gov first. The Patient Registry Profile includes a display of the ClinicalTrials.gov NCT ID, a hyperlink which will open the record on ClinicalTrials.gov.

The NCT ID, Brief Description, and Long Description will be populated in the RoPR once the ClinicalTrials.gov record has been released or updated.

Can I export or print from 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.

How can I bookmark a Registry Profile?

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.

Can I see the changes made to a Registry Profile?

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.

What happens if a Registry Profile isn't updated for a long time?

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.

How can I list a Registry Profile on the RoPR?

Access is granted via the posting of a record in the ClinicalTrials.gov's Protocol Registration System (PRS): https://register.clinicaltrials.gov/.

A record must be created in PRS and be identified as a Patient Registry. At specific points in PRS a link will be present to the RoPR Registration System (RRS). This link will display in the Patient Registry data section, or on the Complete or Release actions. Clicking on this link will open a new window with the RoPR RRS, and will allow the user to list a Registry Profile on the RoPR.

For more details on PRS or to obtain account for that system, please visit http://clinicaltrials.gov/ct2/manage-recs/how-register.

How do I contact the RoPR team?

E-mail roprsupport@outcome.com with any questions.