How to Understand and Get the Most Out of ClinicalTrials.gov
Methods
Respondents were drawn from participants at the CLL Patient Education and Empowerment Meeting prior to the CLL Clinical Research Consortium held in San Diego, CA from April 22-23, 2015. The CLL Society was able to collect 38 complete surveys and respondents were evenly balanced between male (51%) and female (49%). Ages ranged from 47 to 85, with a median age of 68.
Figure 1. Treatment Status of Survey Respondents
Clinical Trial Participation
A little over one-third (36%) of participants reported that they have participated in a clinical trial with much greater percentages reported by those who had received some type of treatment (75%) versus those who were Watch & Wait (0%). [Figure 2] Interest in participating in a clinical trial in the future was exceptionally high for all groups. [Figure 3] While this respondent group may be more highly motivated towards clinical trials given their attendance at the meeting described above and may not represent that of the general population of CLL patients, data from this respondent group is similar to data from a much wider patient pool gathered by the CLL Society in December 2014. (See 2014 Survey Results on our website)
Figure 2. Have Participated in a Clinical Trial
Figure 3. Would Consider Participating in a Clinical Trial
Search Engine Functionality
Participants were asked to rate their level of interest (on a scale from 1 to 5, with 5 indicating Very Interested and 1 indicating Not Interested) in the ability to search by various criteria for clinical trials for CLL. Participants were most interested in the ability to search by Disease Stage and Location, followed by Phase of Trial, Class of Drugs and Avoiding a Class of Drugs. [Figures 4 & 5]
Figure 4. Level of Interest in Search Criteria for a CLL Clinical
Search Engine (% of ratings 4 or 5)
Figure 5. Level of Interest in Search Criteria for a CLL Clinical
Search Engine (continued) (% of ratings 4 or 5)
Conclusion
In a previous survey performed in December 2014 which accrued 419 complete responses, almost one-third of respondents had participated in a clinical trial with 91% of non-participants reporting that they would consider future participation. Respondents who were diagnosed 2 or fewer years ago, or reporting a “Watch and Wait’ treatment status reported lower participation, but high levels of future consideration.
The current survey, although from a much smaller respondent pool, revealed similar results with just over 1/3 of the total group, and 75% of those who have received any treatment reporting current or past participation in a clinical trial. Whether treatment-naïve or treatment experienced, over 90% of respondents expressed interest in future participation in clinical trials. With that consistency of participation and interest in clinical trials, this survey expands the feedback to include interest levels in specific search fields and filters.
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