Users of CT.gov Want Plain Language, Greater Standardization in Modernization Effort
Users of ClinicalTrials.gov want improved website functionality, greater standardization in the submission process of trials and trial results and more plain language content.
CT.gov should allow trial searches by genetic mutation or biomarker, intervention type, disease subtype, inclusion or exclusion criteria, and physical distance between study sites and location of participants. Other users said they wanted to have an option that would allow them to download a list of search results as well as a feature that could notify them when updates are made to saved searches.
That’s the upshot of 268 comments sent to the National Library of Medicine (NLM) about modernizing CT.gov. Many responses described the desire for more plain language that would be user-friendly, especially for patients, caregivers and advocacy groups.
The comments were summarized during a virtual public meeting last week; 49 percent of commenters were researchers, 19 percent were patients and caregivers and the remaining respondents classified themselves as “other” users.
Approximately 20 percent of those commenters want to improve the functionality of CT.gov’s study records. Commenters suggested that certain information in the study record — including eligibility criteria, funding sources, study status and funding information — should be displayed more prominently.
A poll conducted during last week’s virtual meeting found that half of participants rated standardization for data elements the most important change that can be made to the clinical trials registry. Close behind was more flexibility for data elements and study record structure, which was rated important by 35 percent of participants. Approximately 30 percent of participants also said they would prefer the registry include more tools to simplify data entry.
Allowing users to upload Microsoft Excel files to the site’s database or to import data directly from electronic data-capture systems were common suggestions for accomplishing that.
Many respondents recommended improvements to the website’s search engine. One recommendation included the addition of a function that would walk users through the steps of building a search query.