Patients, Caregivers and Clinicians Use My Cancer Genome

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By Steven Randazzo | On Mon, 07/23/2012 - 3:10pm

The next installment of HealthData.gov’s blog post series highlighting applications that have been developed leveraging U.S. Department of Health and Human Services data features My Cancer Genome.  Developed by a team at Vanderbilt University, My Cancer Genome leverages the National Cancer Institute’s PDQ clinical trial registry to connect people to clinical trials.  My Cancer Genome was featured on the main stage at this year’s Health Data Initiative Forum III: Health Datapalooza.  

Below is a guest post by Christine Micheel Ph.D., Program Manager for Content, Vanderbilt Univerity.

My Cancer Genome (MCG), the nation’s first personalized cancer medicine decision support tool, was launched by Dr. William Pao and Dr. Mia Levy of Vanderbilt University in January 2011. The application features three parts: information about cancer mutations and related targeted therapies, a clinical trial search tool, and a database of patient-level mutation and treatment response data.

MCG provides up-to-date information on cancer mutations and targeted treatments in nine cancer types, contributed by physicians and physician–scientists around the world. Patients and caregivers have provided feedback on the website.  One caregiver said, “Since new targeted therapies are critical for [my wife’s] health, I check here regularly for anything new and to get a better understanding of cancer and its treatment.” A patient said, “I printed out the page on ovarian cancer and will take it to my physician to discuss.”

Dr. Leora Horn, a Vanderbilt oncologist, spoke with me about her patients’ experiences with MCG. “One of my patients took a proactive approach. Upon viewing her tumor mutation testing results, she learned that her tumor had a PIK3CA mutation. She searched the internet for information and found MCG. She came to her next appointment with a printout and asked about the drugs and clinical trials described.”

The clinical trial search tool on MCG allows users to search clinical trials based on both disease and gene. To make this possible, MCG annotates the National Cancer Institute’s PDQ clinical trial registry with information on genes being evaluated in therapeutic clinical trials. One patient said, “The site is great! I am always looking for information on clinical trials that I may be eligible for, particularly those concerned with genomic research.”

Dr. Horn and Dr. Pao created DIRECT, the DNA-mutation Inventory to Refine and Enhance Cancer Treatment, a database that contains deidentified, patient-level information on lung cancer patients’ EGFR mutations, treatment regimens, and responses to treatment. DIRECT data is extracted from publications identified through a PubMed medical search heading (MeSH) search.

About DIRECT, Dr. Horn said, “Oncologists find DIRECT most useful when one of their patients has a rare EGFR mutation. In my own experience, I recently had a patient with a rare EGFR mutation. We found four patients in DIRECT with the same mutation. I needed to decide whether to recommend treatment with an EGFR tyrosine kinase inhibitor (TKI)—a type of targeted therapy—or with traditional chemotherapy. Because three of the four patients in DIRECT had responded to EGFR TKI therapy, I was better informed to make a decision about the targeted therapeutic.”

The MCG team is hard at work enhancing the clinical trials search and expanding the diseases and genes represented in MCG descriptive content and DIRECT.

You can see a full demo of My Cancer Genome here.

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Comments

Mark Perry's picture
Mark PerryAugust 07, 2012 - 09:13 am

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Tommy McCartney's picture
Tommy McCartneyAugust 08, 2012 - 07:11 am

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Mark McCartney's picture
Mark McCartneyAugust 08, 2012 - 09:20 am

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