What choices exist if the data requested are not routinely collected by the registry?

• A. Restructure the request to use routine data
• B. Deny the request if data cannot be obtained for legal or practical reasons
• C. Perform a special study to collect the desired information
• D. All of the above

Answer: (D)

When data requested aren’t part of what the registry routinely collects, there are several legitimate paths to obtain the needed information. One approach is to restructure the request to use data that the registry already collects by mapping the desired variables to existing fields or by linking to other data sources to derive the measures. This makes use of what’s readily available and avoids creating new data collection burden.

A second approach is to deny the request if obtaining the data is not possible for legal or practical reasons, such as privacy protections, data-use restrictions, or resource limitations that make retrieval infeasible.

A third approach is to conduct a special study designed to collect the information specifically required, with appropriate study design, approvals, and funding. This fills gaps that routine data cannot cover.

Because each situation depends on feasibility, legality, and resource considerations, all of these options are valid paths; the best choice depends on the context.