ClinWiki

ClinWiki is a free, open-source, web-based application that helps patients with catastrophic illnesses not well managed by the “standard of care” understand their clinical trial options. We provide a unique search tool that enables researchers and patient advocates from specific disease communities to curate relevant trials to help patients, caregivers, and care teams make informed treatment decisions. Helping patients find and enroll in the best trials for them leads to both better patient outcomes and more successful trials and contributes to the advancement of medical innovation.

Our platform is complementary to—and improves upon—existing resources and is updated continually with trial information from clinicaltrials.gov and other sources. We provide annotation and curation in the style of Wikipedia, along with better search tools and the detailed, accurate information patients and caregivers need to understand and choose the best clinical trial. In aggregate and with our improved search interface, ClinWiki becomes THE comprehensive resource to navigate clinical trial options for a particular condition or disease.

ClinWiki helps meet the needs of two separate but mutually dependent constituencies: patients with advanced disease and care teams—who desperately need help finding and understanding clinical trial options with potential to extend life or cure; and entities, including pharmaceutical companies, academic medical centers, and federal agencies (NIH, DoD, the VA)—who need to connect with the right patients in order to increase rates of enrollment and decrease resources focused on enrollment, both which contribute to faster and more successful trials.

Areas of impact for patients and caregivers once a ClinWiki subsite is launched:
● increased number and quality of treatment options;
● better clinical research literacy;
● improved qualification and matching of patients and trials;
● psychosocial benefits as patients feel more in control;
● improved treatment decision-making;
● empowerment of patients to communicate with care teams; and
● better patient treatment outcomes.

On an ongoing basis, we closely track the number of constituents searching for clinical trials via Google Analytics and other administrative tools.

The main public repository of clinical trial information, clinicaltrials.gov, might seem an adequate resource. Unfortunately, it is actually dangerously incomplete and deeply flawed and seems to be maintained only for purposes of compliance. Much of its information is out of date, inconsistent, and/or incorrect (e.g., Duke University misspelled 150+ different ways) and listings rarely include details such as whether travel assistance is provided.

There are “trial matching service” companies that seek patients to participate in specific studies, but they work from the pharma or researcher perspective, rather than being patient-centric. In future, ClinWiki content may partner with such companies to serve the interest of patients, but extremely sick patients seeking trials need unbiased, transparent, and complete information—today.

ClinWiki is a 100% patient-focused organization, not beholden to government or commercial entities. Shaped by and for patients, genuinely agnostic, and complementary to existing resources, our truly open-source platform encourages users to give back to their communities in the form of knowledge and makes it easy to do so. At its core, ClinWiki is an accessibility service that removes barriers to care and contributes to the reduction of health disparities by providing medically vulnerable and disabled patients with access to clear, understandable clinical trial information, that is, for many, a matter of life and death.

We are working with Code The Dream (CTD), which is a non-profit coding academy that provides free intensive training in software development to people from diverse, low-income backgrounds. In CTD Labs, coders work with experienced mentors to hone those skills by building apps and technology platforms for a range of startups, nonprofits, and government clients. We currently contract one senior developer and three junior developers from CTD to be the main developers of ClinWiki. The CTD team is extremely skilled and fully understands the vision and need for ClinWiki. Sufficient funding will allow us to build the features on our roadmap and rapidly scale—and allow us to bring on additional CTD developers, providing critical mentorship and experience for these developers.

We have a track record of successful subsite launch and execution with five disease areas and advocacy partners:
+ Amyotrophic Lateral Sclerosis (ALS) site in partnership with The ALS Association
+ Brain Cancer site in partnership with the Musella Foundation For Brain Tumor Research & Information
+ Lynch syndrome (inherited condition that increases risk of colon, endometrial, and several other cancers) site in partnership with the AliveandKickn Hereditary Cancer Foundation
+ Stomach Cancer site in partnership with Hope for Stomach Cancer
+ COVID-19 site in collaboration with several partners

Our ALS community has been our most robust and engaged collaboration; we completed curation of the 125+ active clinical trials, and, on average, 40 searches per day are being performed on the ALS ClinWiki. We have been raising awareness and promoting the subsite via monthly newsletters and webinars with patients and care managers. Among all disease areas we have annotated nearly 5,000 clinical trials. We are approaching 100 unique users per week, and have plans in place to dramatically increase that number.