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Transcript of Ctrials.org
Why the problem exists
Less than 4% of cancer patients participate in clinical trials
Why visualize clinical trial information?
Crowdsourcing the content patients and physicians need about trial options.
A platform to assemble and annotate information about clinical trials, including facts and opinions.
Data becomes information and wisdom to make informed decisions
Often leading to no decision/participation
It is a “visualization” issue AND
an “information” issue
They are already participating
They just need a platform…to contribute.
Online ratings and Social Media
It's what isn't here!
Visualize through the Power of the Crowd
Which trials are most promising
Which trials are right for me?
What does my doctor and leaders in the field think?
Trade-off of travel, effort, risk, reward, comparison to alternatives
Scientific data is spread around the web
Study designs and justifications are locked behind closed doors
No transparent views into opinions and facts
No Guidance on decisions
Unstructured data isn’t searchable
Will People Participate?
Information should answer patients' questions.
13 Million Cancer Patients Living
“Will you travel?
100s of Advocacy Groups
Millions of hours spent researching, repeating effort
Hoos WA, James PM, Rahib L, et al: Pancreatic cancer clinical trials and accrual in the United States. J Clin Oncol. 2013 Sep 20;31(27):3432-8. doi: 10.1200/JCO.2013.49.4823
The information people need is not easily accessible or doesn’t exist
Experts (KOLs) are the few that are “fully informed”
Some private databases, with expensive, dedicated curators available to companies
Patients and their physicians left without information to make an informed decision
Ratings by users, on multiple dimensions help create an understanding of trial information.
Pro-Con Wiki style articles curate the opinion of the crowd.
Transparent and linked
This study has a strong scientific basis for a rational target. Phase II data showed a potential for a 50% increase in survival.
Unstructured, non-searchable inclusion criteria can be structured (and verified) by crowd
To allow easy comparison of trial, drug and mechanism, related studies are structured and linked to source content
Patients, researchers, doctors, care givers can contribute and consume content both anonymously and registered and certified.
Ratings, opinions, content all referenced to contributor's level and certification
Search results incorporate all crowd input, previously not accessible
Selecting Trial filters for trial specific locations and opens trial review summary