Hillary Theakston is the Executive Director of the Clearity Foundation, a 501(c)3 not-for-profit focused on helping women with recurrent ovarian cancer make more informed treatment decisions on the basis of personalized genomic information.
The Clearity Foundation represents “Hope” for patients. It was launched in 2008 to revolutionize ovarian cancer treatment through its exceptional science-based database including information on how to get tumor profiling analysis and how to find current clinical trials.
“Clearity needs donors and supporters to join with us to help rewrite the story of ovarian cancer”, Hillary states. “We owe it to the women we’ve lost too early – to fight for the lives of their daughters and granddaughters”.
Why the Clearity Foundation? What is its history?
Ovarian cancer is a devastating disease with unacceptably poor survival rates, minimal treatment options that lag decades behind other cancers, and no routine diagnostic test that can catch women in early stages of the disease. Each year in this country we are losing 14,000 of our mothers, sisters, partners and friends to this disease. Only one-third of women diagnosed with ovarian cancer survive more than ten years and the lives of far too many talented women are cut short.
For the 22,000 women who are diagnosed in the United States every year, they too often feel the hopelessness of these statistics and many feel that their physicians have given up on them. Women with ovarian cancer are fighting for their lives and feel overlooked and left behind in a sea of pink ribbons. There aren’t legions of survivors and billions of investment dollars focused on helping women with ovarian cancer live to see graduations, marriages and grandchildren.
The Clearity Foundation is committed to science, devoted to patients, and is a trusted partner to women and their families for the ovarian cancer journey. We are the only organization focused on empowering patients with science-based information to make the most informed treatment decisions for them, based on their biology, their genetics and their priorities.
How are you revolutionizing ovarian cancer treatment?
Since our founding in 2008, Clearity has supported more than 600 women in making more informed treatment decisions. We’ve counseled families on treatment options and investigated promising new therapies and diagnostic technologies. We’ve argued with insurance companies to reimburse for new, targeted treatments for patients who are responding to drugs approved for other cancers. We’ve educated doctors about the science and data behind their patients’ tumor profiles.
Today, we continue to share the latest information available regarding treatment options and guide women to clinical trials where appropriate. We connect women through an online network where they can offer one another support. We work with patients and families to collect outcomes data and have grown our database to the point that we are partnering with scientific and clinical collaborators to conduct studies that may lead to new treatment insights.
For an ovarian cancer patient who has found your site, what is the best way to navigate it?
The first stop for a patient or caregiver should be to register for the Clearity patient portal. This is an online community with the latest news and information about ovarian cancer that patients and families can trust. Clearity’s public website has helpful information about tumor profiling and clinical trials — both are options for patients who are interested in being fully informed about their treatment options. Clearity’s clinical trial tools can help patients more easily find trials that are relevant to them and evaluate their treatment options based on scientific data. Finally, take a look at our patient testimonials for inspiration and hope from other patients and families who are also on this ovarian cancer journey.
Can you explain the importance of the Clearity Foundation’s Tumor Blueprint program, who should be tested and what does it cost?
At no cost to them, Clearity provides patients and families with hours of personal counseling from science experts regarding their unique case. We help women with recurrent ovarian cancer access the most accurate and comprehensive tests available to better understand the molecular drivers of their cancer. Our profiling approach synthesizes data from multiple sources that measure the levels of specific protein biomarkers and detects certain genetic changes that are relevant in ovarian cancer. The resulting tumor profile provides information that enables physicians to select drugs that match each patient’s individual disease and may therefore be more effective than other options.
In addition, we share the latest information available regarding treatment options and guide women to clinical trials where appropriate. We connect women through an online network where they can offer one another support. Women whose ovarian cancer has recurred will obtain the greatest benefit from a Tumor Blueprint since decisions regarding next-line treatment are less standardized than they are at diagnosis. But, we can also assist newly diagnosed patients as they make decisions for their treatment.
For those patients who want to look at ovarian cancer clinical trials, your website has the latest research information and is a great resource. Can you tell us what ovarian cancer patients need to know?
Whether women are newly diagnosed or have recurrent ovarian cancer, the new learning needed to make informed decisions on treatment choices is immense. We want to make it easy to find these results so that women don’t have to search everywhere to find the information that can help them make informed choices about treatment options. Clearity is helping to reduce that burden by assembling the results from key ovarian cancer clinical trials in a new Trial Results Finder. Combined with the news feed that is available on the Patient Portal, this new addition creates a one-stop-shop for learning about the latest in ovarian cancer. The Trial Results Finder gives women the opportunity to see how new drugs and treatment strategies have performed in ovarian cancer clinical trials, some of the most important information for deciding on a treatment strategy and if a clinical trial should be part of it.
A woman can now rapidly identify clinical trial results most relevant to her disease status using the “clinical situation” search. Alternatively, she can find results from studies of specific drugs that are indicated by her tumor blueprint to be a potential treatment option using a “drug name/drug class” search. Although clinical trial results can be found through internet searches, the Clearity Trial Results Finder is a unique resource. It is focused on ovarian cancer trials, is updated as soon as the trial results are published, and presents the results in both a visual graphical and tabular format. Visual presentation of the data helps with interpretation of complex information. With the Trial Results Finder, the colored bar graphics help make sense of the clinical trial results retrieved by the search, especially when results from multiple trials are shown.
What have been the biggest obstacles that the Clearity Foundation have encountered?
Ovarian cancer is often referred to as the silent killer. Because it affects comparatively fewer women than breast cancer, as an example, awareness of ovarian cancer is a challenge for everyone working to improve treatment and survival of this neglected disease. Anyone can help make a difference by spreading the word about ovarian cancer symptoms to help improve early diagnosis. Clearity is committed to raising visibility of our work and the support we provide to patients and families. You can follow us on Facebook and Twitter — and then tell others. You can make a real difference in someone’s ovarian cancer journey.
Your organization is committed to helping women with ovarian cancer make more informed treatment decisions regardless of their financial situation. What is your long-term strategy in maintaining this commitment? How can people provide their support?
The good and the bad news about a formidable and neglected disease like ovarian cancer is that one person can make a difference in this disease. Clearity needs donors and supporters to join with us to help rewrite the story of ovarian cancer. We owe it to the women we’ve lost too early – to fight for the lives of their daughters and granddaughters. Clearity is supported 100% by philanthropic gifts and gratefully accepts donations of all sizes. With additional funding we could help more women in need and could expand the services we provide.
Clearity’s donors are gratified to know that their contribution is supporting someone who is in the fight today, as well as helping to change the story for future generations of women. Visit our website to make a contribution today.
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