Become an active contributor in the mission to find a cure for Cholangiocarcinoma!

For a small investment of time, you can provide a wealth of knowledge to researchers worldwide to help them better understand cholangiocarcinoma and identify patients to participate in clinical trials and research surveys.  The more data the registry collects, the more efficiently researchers will be able to focus their endeavors.

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(9 replies, posted in Introductions!)

Thank you to all for the very warm welcome.  I am looking forward to meeting everyone at the Stakeholder's Conference tomorrow.

Carl – the concept of the “voice of the patient” is tied to a new model of “patient-centered” healthcare.

The patient is becoming the primary driver behind drug discovery and development, access to drugs, and healthcare policy. Patient input has begun to have a growing influence on the design of clinical trials, endpoints/outcomes, and weighing of benefit versus risk. Industry and regulatory agencies have begun to look for the best ways to engage patients in meaningful dialogue and optimize their input.

The goal is to put the patient at the center of the healthcare system.  This model helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community. Patient-centered care requires a systematic, deliberate and ongoing engagement of patients in dialogue about priorities, clinical investments, and therapeutic strategies.

To begin this conversation amongst the many stakeholders, I created the Drug Information Association (DIA) Patient Engagement Program to ensure that the 'voice of the patient' is heard globally in every facet of the discovery, development, and life-cycle management of pharmaceuticals, biotechnology, medical devices, and related healthcare products.  The program provides the tools needed to ensure that advocates improve their capacity to disseminate reliable, objective, comprehensive, and understandable information to their constituents. They learn how to raise awareness among industry, government, regulatory agencies, academia, and the scientific community about the importance of active involvement of “patient experts”. 

I met Marion Schwartz in 2012 when she participated in the DIA Patient Engagement Program.  I think that she will agree that the experience empowered, engaged, equipped and enabled her to better represent The Cholangiocarcinoma Foundation and the many people whose lives have been touched by this disease.  The ultimate goal is to give the patient a voice, to ensure the patient perspective is heard, and to provide vehicles for patients to convey their messages and offer their invaluable opinions while finally having a “seat at the table.”


(9 replies, posted in Introductions!)


I am new to this site but not new to the topic of Cholangiocarcinoma.  I have had the pleasure of meeting Marion Schwartz and working with her to integrate the 'voice of the patient' into the drug development process.  I will be attending the upcoming Stakeholder's Conference in Salt Lake City and am looking forward to meeting the many people who are so devoted to the mission of The Cholangiocarcinoma Foundation.

~ Donna