The Cholangiocarcinoma Foundation’s Patient Advocacy Initiatives

March 2022, Vol 3, No 1

At the 2022 Cholangiocarcinoma Foundation (CCF) Annual Conference on February 22-25, Melinda Bachini, Director of Advocacy of CCF, provided an update about the foundation’s advocacy and patient support initiatives. The goal of the CCF’s advocacy group is to provide educational and emotional support for the cholangiocarcinoma (CCA) community of patients and caregivers, and to empower them with the knowledge and guidance needed to self-advocate.

Newly Diagnosed/New to the CCF Program

Ms Bachini presented updates about the newly launched Newly Diagnosed/New to the CCF Program. She said that this program was initiated “because we knew there was a need to reach out to patients and caregivers immediately after their diagnosis. We knew that patients and caregivers needed guidance and resources that we had available for them.”

Ms Bachini reported that at the time of the CCF annual meeting, more than 700 newly diagnosed or newly connected patients with CCA and caregivers have enrolled in the program since its launch in August 2021, noting that “it has been an incredible, successful program.”

The program involves sending an introductory e-mail series that leads patients through the CCF resources and the options that are available to them, a set of positive video interviews with patients and caregivers, and a care kit that “has a lot of goodies in them, and some comfort items, just to let them know that they are not going through this alone.”

Ms Bachini provided details about the characteristics of the database of newly diagnosed patients and new caregivers in the program. In total, 420 patients and 266 caregivers were enrolled in the program. Of these, 331 had a diagnosis of (or represented patients with a diagnosis of) intrahepatic CCA, and 279 were unsure of the exact diagnosis.

The majority (N = 619) of the enrollees had not heard of the CCF before. The majority of the patients were diagnosed between 2020 and 2022, including 127 in 2022, 430 in 2021, and 68 in 2020.

Responding to questions from CCF, the majority of the enrollees concurred that this new program was helpful, providing important information in the following ways:

“Encouraged me to get a second opinion from a CCA specialist”

“Provided me with helpful education materials about CCA”

“Informed me about biomarker testing”

“Offered me hope about long-term survival.”

Additional CCF Initiatives

Ms Bachini provided updates on other CCF initiatives that were launched in recent years.

Support groups. A virtual patient and caregiver support group platform was launched in September 2020. Through this CCF platform, in 2021, 26 support groups were held and included a total of 560 patient and caregiver attendees. Ms Bachini hopes that 50% of newly diagnosed patients with CCA will enroll in 2022.

New research webinar. A webinar series was implemented to inform patients and caregivers about the most up-to-date research, science, and clinical trials. A total of 10 webinars were conducted in 2021 with 1055 registered patients, caregivers, and research advocates, which received 2090 on-demand views.

Nutrition resource. The CCF developed a nutritional and diet resource in partnership with the Oncology Dietician Practice Group (ON DPG), designed specifically for patients with CCA.

As a CCA survivor herself, Ms Bachini said, “Nutrition has always been one of the most asked-about questions from patients and caregivers. And I think it’s because as patients, we feel that that’s the one thing we have some control over during this diagnosis.”

She noted that this resource contains helpful tips, recipes, and guidance about key nutrition principles for patients with CCA.

Patient registry. A new patient registry was launched by the CCF in partnership with Ciitizen (which was later acquired by Invitae), a health technology platform for patient data collection that may be used to advance CCA research, as well as to recruit patients for clinical trials, and help patients collect their medical records at no cost to them.

Related Items

CCF Celebrates Major Milestone in Connecting Patients and Caregivers to Mentorship Program
September 2023, Vol 4, No 3
The Cholangiocarcinoma Foundation (CCF) is celebrating the 1000th mentor–mentee match and 6 years of their mentoring program, CholangioConnect. CCF has developed unique resources to help patients and caregivers navigate their healthcare journeys.
10th Annual Cholangiocarcinoma Foundation Conference: International Collaboration, Patient Connections, Industry Updates
June 2023, Vol 4, No 2
Cancer investigators and clinicians from around the world connected with patients, caregivers, and industry officials at the foundation’s conference in Salt Lake City, UT.
CCF Welcomes a New Standard of Care
By Allison Deragon, Cholangiocarcinoma Foundation
March 2023, Vol 4, No 1
CCF discusses the approval of durvalumab for cholangiocarcinoma, a milestone that, it is hoped, will open doors for other innovative immunotherapy combinations.
Think Tank of Multidisciplinary Experts Develop Proposals to Improve Outcomes in Patients with CCA
December 2022, Vol 3, No 4
A group of 29 expert scientists and clinicians from the world’s leading academic institutions developed potentially transformative project proposals while gathered in Las Vegas for a 2-day meeting called Cure Cholangiocarcinoma Think Tank (C2T2).
International Cholangiocarcinoma Patient Registry Accelerates and Supports CCA Research
September 2022, Vol 3, No 3
The Cholangiocarcinoma Foundation hosts a patient registry, the International Cholangiocarcinoma Patient Registry (ICPR), that is a global database comprising patient medical histories and treatments for cholangiocarcinoma (CCA).
Clinical Trial Enrollment Challenges for Patients with Cholangiocarcinoma
By Reham Abdel-Wahab, MD, PhD; Samantha Pear
June/July 2022, Vol 3, No 2
There is a desperate need for patients with CCA to gain access to clinical trials to help improve survival.
New ICD-11 Codes for Cholangiocarcinoma
December 2021, Vol 2, No 4
The Cholangiocarcinoma Foundation (CCF) is encouraging healthcare professionals to support the adoption of the new International Classification of Diseases, 11th Revision (ICD-11), and its role in creating more robust epidemiological data for cholangio­carcinoma (CCA).
The International Cholangiocarcinoma Research Network: Educational and Research Achievements
By Reham Abdel-Wahab, MD, PhD
December 2021, Vol 2, No 4
In 2015, the Cholangiocarcinoma Foundation (CCF) launched the International Cholangiocarcinoma Research Network (ICRN). This network is a global collaborative of clinicians, researchers, and scientists from leading academic medical centers and research institutions working together to improve the prevention, early detection, treatment, and prognosis of cholangiocarcinoma (CCA).
Navigating Compassionate Use Options for Your Patients with Cholangiocarcinoma
By Melinda Bachini
September/October 2021, Vol 2, No 3
I believe that the most powerful and positive force in medicine is that of a self-advocating patient. At the Cholangiocarcinoma Foundation, we strive to connect, educate, and empower patients with cholangiocarcinoma (CCA) to partner with their care team in navigating the course of their treatment. However, we understand that the treatment options are extremely limited for many patients with CCA.
A Watershed Moment for the Cholangiocarcinoma Community
By Stacie C. Lindsey
June/July 2021, Vol 2, No 2
In an article published last year in CCA News, I shared the Cholangiocarcinoma Foundation (CCF)’s philosophy on taking risks and leveraging collaboration over competition. The CCF was nearing its 15th anniversary, and the FDA had recently approved pemigatinib (Pemazyre), the first targeted therapy approved for cholangiocarcinoma (CCA).

Subscribe Today!

To sign up for our newsletter or print publications, please enter your contact information below.

I'd like to receive: