From: Development of a pharmacoeconomic registry: an example using hormonal contraceptives
Best practices | Considerations | Need |
---|---|---|
1. Transparency, public availability and dissemination: Enable provision of registry to the public with minimal barriers to access. | • Planning ahead to discuss with funding agency, other stakeholders about making the proposed registry publicly available upon completion • Should use universally used software to access (e.g. Microsoft Excel) • Must have clearly defined documentation accompanying the registry to aid in defining terms and usability. | • Promotes greater collaboration, especially among policy-makers in low and middle income countries • Crowd-sourcing of potential studies for inclusion into the registry • Identification and correction of potential errors or incorrect information |
2. Expert panel: Convene a team of experts in pharmacoeconomics and outcomes research | • Include a team consisting of a trainee along with several PhD-level experts • Experts should have the time and willingness to aid in the review, data extraction and update meetings | • A team-based approach to curating data for a registry ensures accuracy and allows for provision of continuous feedback |
3. Data operationalization: Ensure that the registry is queryable to the extent desired | • Developers of a registry can start by having descriptive variable fields which can then be operationalized as categorical to enhance filtering and querying capabilities | • Variables that are coded as nominal or ordinal categories can aid in data analysis |
4. Testing: Provide access to beta version of the registry to various stakeholders at regular intervals to gather additional feedback | • Setting the variables of the registry a priori results in lesser potential to account for future changes and improvements to the registry • Identify overt transcription errors | • Flexibility and iteration in registry building process allows for customizing registry for the purpose of the individual study |