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Thank you for attending the 2024 Annual Conference
Save the Date for the 2025 Research Priorities Consensus Conference, April 9-12, 2025

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Newly Diagnosed/New to CCF Initial Survey

Please answer the following questions so we can better serve you.

In order to collect a cholangiocarcinoma care kit, please provide your contact information as indicated below.

Only one (1) care kit per household
Care Kits are only available to U.S. residents at this time
Only available to cholangiocarcinoma patients and their caregivers

Are you a...(Required)

Contact Information

Please provide the patient's contact information

Name(Required)

First Last

Address(Required)

Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country

Email(Required)

Phone(Required)

Would the patient like to receive text messages from the Cholangiocarcinoma Foundation?(Required)

How did the patient hear about the Cholangiocarcinoma Foundation?(Required)

Search engine (Google, Yahoo, etc.)

Facebook

Twitter

LinkedIn

Instagram

Physician Referral

Family Member/Friend

Other

When was the patient diagnosed with cholangiocarcinoma?

Month(Required)

Year(Required)

Hidden

(No longer active) What type of cholangiocarcinoma was the patient diagnosed with?

Intrahepatic Cholangiocarcinoma [cancer occurs inside the liver where cancer develops in the hepatic bile ducts or the smaller intrahepatic biliary ducts]

Perihilar Cholangiocarcinoma or Hilar (Klatskin Tumors) [a type of extrahepatic cholangiocarcinoma where cancer develops where the right and left hepatic ducts have joined and are leaving the liver]

Distal Extrahepatic Cholangiocarcinoma [a type of extrahepatic cholangiocarcinoma where cancer occurs outside the liver after the right and left hepatic bile ducts have joined to form the common bile duct. This type of cancer is found where the common bile duct passes through the pancreas and into the small intestine]

Not sure

Other

What type of cholangiocarcinoma was the patient diagnosed with?(Required)

Intrahepatic

Extrahepatic Perihilar

Extrahepatic Distal

Combined HCC and CCA

Gallbladder

CUP - Cancer of Unknown Primary

Hidden

Which race/ethnicity best describes the patient? (OLD)

Asian or Asian American

Black or African American

Hispanic, Latinx, or Spanish origin

Native American or Alaska Native

Native Hawaiian or other Pacific Islander

White Non-Hispanic

Don’t know

Prefer not to answer

Prefer to self describe

Which of the following best represents the patient's ethnicity?(Required)

Hispanic or Latino

Not Hispanic or Latino

Which of the following best represents the patient's race?(Required)

American Indian or Alaska Native

Asian

Black or African American

Native Hawaiian or Other Pacific Islander

White

Some other race

Prefer not to answer

Self described ethnicity

To what degree do you agree or disagree with the following: The patient was provided with treatment options by their doctor/medical team(Required)

To what degree do you agree or disagree with the following: The patient and/or caregiver understood the treatment options provided by the patient's doctor(Required)

Was the patient encouraged to receive a second opinion?(Required)

To what degree do you agree or disagree with the following: The patient and/or caregiver was provided with information on biomarker testing, also known as molecular profiling, genomic testing, or NGS testing?(Required)

(please view the above biomarker video for more information)

Was biomarker testing done?(Required)

If no, why?

Insurance did not cover

Too expensive

Not enough tissue

Doctor did not recommend

Other

To what degree do you agree or disagree with the following: The patient and/or caregiver was provided with information on clinical trials by the patient’s doctor/medical team(Required)

Was a clinical trial offered as a first-line treatment for this cancer? (First-line treatment is defined as the first treatment received)(Required)

How would the patient and/or caregiver currently rate their anxiety as pertaining to the diagnosis?(Required)

To what degree does the patient and/or caregiver feel they have access to emotional support for the disease?(Required)

To what degree do you agree or disagree with the following: The patient and/or caregiver is able to advocate for the patient’s medical needs(Required)

Has the patient and/or caregiver actively sought information about the diagnosis outside of their doctor/care team?(Required)

What information did the patient/caregiver obtain and what was the source? (if known)

Would the patient and/or caregiver like the Patient Advocates at the Cholangiocarcinoma Foundation to contact them?(Required)

[Patient Advocates can help assist with resources, clinical trial information, and providing emotional support, among other things]

Our Core Values:

Patients First

Patients First

Patients First

Patients are central to everything we do. They influence how we plan, implement, and measure our success.

Collaboration

Collaboration

Collaboration

CCF is the catalyst for collaborative opportunities, bringing scientists, clinicians, and other stakeholder groups together to share research, resources, and funding.

Innovation

Innovation

Innovation

CCF actively pursues innovative methodologies, technologies, and partnerships to energize and drive our programs, research, and funding strategies.

Innovation

Urgency

Urgency

CCF addresses the urgent need for a cure by motivating action, pushing boundaries, and challenging the status quo.

©2024 Cholangiocarcinoma Foundation - All Rights Reserved - Disclaimer

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