Can Collaboration Help Find A Cure for Cholangiocarcinoma?

August 22, 2020
CURE, 2020 Rare Cancers Special Issue, Volume 8,

Advocacy Groups | <b>Cholangiocarcinoma Foundation</b>

Could paradigm shifts in cancer research help find a cure for cholangiocarcinoma? Experts discuss.

Running a mile in under four minutes was believed to be humanly unachievable. Roger Bannister was the first to do it in 1954. Within a year, another runner did it. And soon, many others had as well.

In cancer, these paradigm shifts seem to occur in a similar manner with advancements in treatment often coming in quick succession. Determining the catalyst for this progress is difficult, as changes take years of development. Could collaboration be a catalyst for changing the landscape for rare cancers?

One small rare cancer foundation thinks it is and is leading the way through innovative partnerships. The Cholangiocarcinoma Foundation was founded in 2006 by a family desperate to understand the rare cancer diagnosis that they had just received. Cholangiocarcinoma was not only difficult to pronounce, but also extremely challenging to research. There was not much easily understood information available and there were no resources for patients.

Rare cancers present significant challenges for patients, doctors and scientists. Patients may find it difficult to find a specialist who regularly sees patients with cholangiocarcinoma and has access to the latest research and clinical trial opportunities. Doctors may not treat this cancer, and often may not know experts with whom they can consult or make a referral. Science follows money, and rare cancers are often the least funded, which slows down the discovery and availability of viable treatment options.

Enter the Clements family. Mark Clements was a fit, active, 38-year-old father of three with a fourth on the way when he learned he had an inoperable, incurable cancer. Desperate to find hope, his family began an intensive 15 months of research, networking and connection.

Sadly, the family lost Mark. However, his sister, Stacie Lindsey, and her family were doggedly determined to make sure others could benefit from the growing community and base of knowledge they had begun to create. Focused on the principles of patients first, collaboration, and always maintaining a sense of urgency, the Cholangiocarcinoma Foundation was born. These core values still drive the work of the foundation to this day.

Less than 15 years later, with robust collaborations in place with other nonprofits, regulatory bodies, industry partners, medical start-ups and corporations, the drive for a cure is gaining momentum. In spring of 2020, the community celebrated the Food and Drug Administration (FDA) approval of the first targeted therapy for cholangiocarcinoma. The development of effective treatments takes many years and the contributions of innumerable people and organizations. Closely following are several other treatment options which are currently being developed in the pipeline.

Common to the progress of these developments is deep meaningful, multilevel collaborations. So, could collaboration be the key? True collaboration involves much more than organizations or individuals working together toward a common goal. It is defined by convening partners who each bring unique and specific contributions to the table. Through partnership, organizations can leverage assets to accomplish more than they could on their own.

The Cholangiocarcinoma Foundation has been successful in creating a culture of collaboration in what is, very often, an intensely competitive environment.

Two such partnerships have the potential to be game changing in the rare cancer space. Citizen is a consumer health technology company that has a platform to enable patients to collect, organize and share their medical records digitally. They have developed a user-friendly interface to facilitate the expedited gathering of records from multiple health care facilities into a central, searchable database. Patients are then able to have complete control of their health data. It empowers them to coordinate their care with teams from multiple healthcare providers, to more easily get second opinions and to understand trial eligibility.

Additionally, patients can make their records available to provide clinically validated data to researchers to help develop therapies and options for the rare cancer community. Ciitizen uses the HIPAA Patient’s Rights of Access laws to give them the control over their own Protected Health Information.

Partnering with Komodo Health has helped patients with cholangiocarcinoma access specialists around the country by leveraging their unique intelligence platform which combines de-identified data from over 500 sources capturing more than 320 million Americans’ health care journeys. With this data, the Cholangiocarcinoma Foundation can connect patients with the best care possible through the cholangiocarcinoma specialist map. The map incorporates both clinical and scientific activity for providers across the nation to find the most active clinicians and researchers. The map leads patients and their caregivers to find the top specialists in their area, in hopes of a better chance of survival. The specialist map has had a significant impact on patient lives.

These collaborations could be game-changing because each helps to put power in the hands of the patients. This is especially important in rare cancers where many viable treatment options are often found only at major cancer centers and academic institutions.

The Cholangiocarcinoma Foundation is committed to maximizing partnerships to benefit patients. The Foundation is determined that, through collaboration, they can accomplish what was once believed unachievable, the cure for cholangiocarcinoma.


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