clinicaltrials.gov searching for a trial for intrahepatic CC

The classification can be confusing to patients therefore I requested a change.

At present you list “bile duct cancer extrahepatic” and ” liver cancer.” This classification presents a problem for those patients searching for a suitable trial while presenting intrahepatic disease.

This is the response from the friendly NCI staff:

Thank you for your e-mail about adding cholangiocarcinoma to the list of cancer types on the NCI’s clinical trials search form. It is a pleasure to hear from you again, and I hope that this e-mail finds you well. I have shared your e-mail comments with the NCI staff responsible for this content. We appreciate the time you took to share your thoughts with us, and we also commend you and your foundation for your commitment to patients with cholangiocarcinoma.

Unfortunately, at this time, NCI staff are not able to add this term to the clinical trials search form due to the way the search form terminology is structured and because cholangiocarcinoma falls under more than one type of cancer in the terminology used for this database. However, you may find it helpful to know that patients and online users can retrieve relevant results for cholangiocarcinoma trials by entering “cholangiocarcinoma” in the Keywords/Phrases box on the search form. A search using this term returns results with trials involving both intrahepatic and extrahepatic disease. A link to these clinical trials is available at http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9419395. Alternatively, users may search for multiple cancer types (for example, extrahepatic bile duct; liver; gallbladder) and peruse the results to find relevant research studies on cholangiocarcinoma.

Patients can also call the NCI’s Cancer Information Service (CIS) for help with a customized clinical trial search. The CIS is the source for the latest, most accurate cancer information for patients, their families, the general public, and health professionals. Patients can talk with an Information Specialist by calling 1-800-4-CANCER (1-800-422-6237). CIS Information Specialists also offer online assistance through the LiveHelp link at https://cissecure.nci.nih.gov/livehelp/welcome.asp on NCI’s Web site.

We hope this information is helpful to you and your patients, and thank you for writing.