Washington, DC and CHAPEL HILL, June 1, 2021 — Disease InfoSearch, and ClinWiki today announced a partnership to work collaboratively to enhance the clinical trial information available for the 10,000+ diseases listed in Disease InfoSearch.
Disease InfoSearch is a crowdsourced, long-tail, information hub created and managed by Genetic Alliance. This tool enables disease advocacy groups to compile and publish resources about their disease and includes a feed from clinicaltrials.gov supplying information about clinical trials for each disease. It is functional, but is limited in its ability to be customized for the needs of each individual patient, as well as the unique and important characteristics for each disease. ClinWiki works with disease expert communities in a novel, flexible, and clear wiki structure to allow this critical customization.
ClinWiki will become the clinical trials information center for Disease InfoSearch. Working together, ClinWiki, Genetic Alliance, and the expert advocates will upgrade disease areas, so that newly diagnosed individuals, people living with chronic diseases, and their clinicians can find relevant information to meet their needs.
Every day, thousands in the US are diagnosed with diseases that, even if there are standard of care treatments available, continue to have poor outcomes. For genetic and rare diseases there are even more challenges in therapeutic development. Many patients, once diagnosed, don’t know where to turn or where to start.
Clinical trials, the vehicle to test and prove new treatments, can be a treatment option. When trials are more widely available to patients, in a form they can understand, these trials enroll quickly and efficiently. Patients want to “see” themselves in the trial, understand how it fits their needs, and ultimately how to access it.
One of the ways to increase understanding and participation is by providing the most relevant disease and treatment information, in a tried and true one-stop-shopping website, such as Disease InfoSearch, now in its 35th year.
By consolidating these resources on Disease InfoSearch, ClinWiki will become the quintessential resource for customized clinical trial information. Their aim is to put this information into the hands of patients, their families, and clinicians so that their needs are met and treatments are discovered and developed more quickly.
About Disease InfoSearch
Disease InfoSearch is a product of Genetic Alliance, and serves as a resource for curated and crowdsourced disease information to help individuals access quality and credible information. In addition, Disease InfoSearch connects individuals to support organizations and avenues to participate in research. On Disease InfoSearch, information is aggregated from a variety of resources including advocacy organization’s support information, research activity, journal articles, clinical trials, news, and events. For more information visit DiseaseInfoSearch.org.
ClinWiki is a nonprofit organization based out of Chapel Hill, North Carolina. ClinWiki.org is a web-based platform that enables patient advocates from specific disease communities—including researchers, doctors, scientists, patients and caregivers—to curate relevant trials to help patients, caregivers, and care teams make informed treatment decisions. In addition to providing comprehensive, transparent, and relevant trial information, ClinWiki is making navigation easier with a more intuitive search interface. The result is improved results for patients, better and faster trials and an overall increase in medical innovation. See a recent Genetic Alliance webinar on building ClinWiki communities for more information and a demo of ClinWiki here.
About Genetic Alliance
Genetic Alliance, a non-profit organization founded in 1986, is a leader in deploying high tech and high touch programs for individuals, families and communities to transform health systems by being responsive to the real needs of people in their quest for health. The alliance comprises 10,000 organizations, 2000 of which are disease and patient advocacy foundations and include community health programs, employee wellness programs, local nonprofits, religious institutions, and community-specific programs to grow and expand their reach and mission.