ClinWiki

Helping patients with serious illnesses find clinical trials and make informed treatment decisions, which improves outcomes and advances medical innovation.

CHAPEL HILL, NC   |  https://www.clinwiki.org

Mission

ClinWiki’s mission is to be THE comprehensive source of clinical trial information for patients.

Ruling year info

2016

Executive Director

Amy Westermann

Main address

128 GRAYLYN DR

CHAPEL HILL, NC 27516 USA

Show more contact info

EIN

81-2115153

NTEE code info

Management & Technical Assistance (W02)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Every day, thousands are diagnosed with serious diseases, such as ALS and brain cancer, that, despite having “standard of care” treatment options, continue to have poor outcomes. In addition to incalculable human costs, the economic impact of these diseases is staggering; US yearly productivity loss from disease morbidity/mortality is calculated to be in the hundreds of billions of dollars. And so many of these costs are preventable. Clinical trials are how new treatments are proven to work and, ultimately, become widely available to patients, but despite being the most promising choice, participation is low (less than 5%). Reasons for this include flaws in the main public repository of clinical trial information, clinicaltrials.gov; inaccessible study designs and justifications; lack of transparent views into opinions and facts on each clinical trial; absence of guidance to determine if a clinical trial is right for a patient; and unstructured, and therefore unsearchable, trial data.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Stomach Cancer ClinWiki

Partnered with Hope for Stomach Cancer (StoCAN) to annotate, structure, and review relevant trials to make searching for stomach cancer clinical trials easier for patients, their families, and their care team.

Population(s) Served
People with diseases and illnesses
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of organizational partners

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Stomach Cancer ClinWiki

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    ClinWiki is a free, web-based application that helps patients with serious illnesses that are not well-managed by the “standard of care” make informed treatment decisions. ClinWiki.org leverages experts to deliver an improved clinical trials search platform, providing annotation and curation in the style of Wikipedia (with better search tools) and detailed information patients and caregivers need to understand and choose the best clinical trials. ClinWiki primarily helps meet the needs of patients with advanced diseases and their care teams—who desperately need help finding and understanding the clinical trial options that may be their only chance at extended life or cure. Patients and caregivers utilize ClinWiki to better understand and find clinical trials and promising therapies.

  • How is your organization collecting feedback from the people you serve?

    Focus groups or interviews (by phone or in person), Community meetings/Town halls, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Several users of our tool provided feedback via focus groups that it would be incredibly helpful to be notified when there is a new clinical trial that may be of interest. We worked with our team of developers to implement a notification system, in which users can save and subscribe to weekly email updates about any changes to clinical trials for their condition.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Actively asking for feedback has greatly strengthened our relationship with our community partners and has helped ensure that our tool is easy to use and helpful. Seeking feedback and implementing changes has increased trust and transparency in our organization.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection,

Financials

ClinWiki
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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ClinWiki

Board of directors
as of 4/23/2021
SOURCE: Self-reported by organization
Board chair

William Hoos

Organizational demographics

SOURCE: Self-reported; last updated 04/16/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability