, , ,

IGNITE-TX Study Aims to Identify Individuals for Genetic Testing for Familial Cancer

By Alexa Kanbergs, MD-ScM, MS

What is IGNITE-TX?

Have you been diagnosed with Lynch Syndrome or a BRCA1 or BRCA2 genetic mutation? Do you have family members who have not yet undergone genetic testing? If yes, then this study may be for you! The IGNITE-TX study explores ways to increase genetic testing for family members of those diagnosed with Lynch Syndrome or a BRCA1 or BRCA2 genetic mutation. This is also known as cascade genetic testing.

What the Study Involves

Individuals eligible for the study will be granted access to the IGNITE-TX website. The website contains information about their genetic mutation and how to share information with family members. Participants and their family members will be placed at random into four groups:

  • Group 1: Standard of care, which is receiving a letter with information on their specific hereditary cancer syndrome that they can share with their relatives
  • Group 2: Free genetic counseling and testing
  • Group 3: The IGNITE-TX intervention, which gives family members access to the website and education modules as well as access to a study navigator
  • Group 4: The IGNITE-TX intervention and free genetic counseling and testing.

All participants (including family members enrolled in the study) will be asked to complete a baseline survey and then follow-up surveys at 6 and 12 months. Participants will receive a $10 gift card after completion of each survey.

Why Should I Enroll? 

There are good reasons to join the IGNITE-TX Study. First, you get to help others. By joining, you can help test your family members, and it also helps us learn better ways to conduct genetic testing for people whose family has a history of cancer. Additionally, everyone who takes part in the study will be compensated for their time.

How Do I Know if I am Eligible to Enroll?

You are eligible to participate in this trial if:

  • You are 18 years of age or older
  • You or your family member has a positive genetic test result  for the BRCA1/BRCA2 mutation or Lynch syndrome (MLH1, MSH2, MSH6, PMS2, EPCAM mutation)
  • You have an email address and/or a U.S. cell phone number
  • You speak English or Spanish

You are not eligible to participate if:

  • You do not have any relatives
  • You do not have one of the genetic conditions listed above or only have been told you have a variant of uncertain significance

Study Locations

We are targeting enrolling patients throughout the U.S.

Study Contact Information

J. Alejandro Rauh-Hain, PI

Heidy Bosch Study Coordinator

Study specific contact information: [email protected], Phone: 713 792 9155

 

Clinicaltrials.gov identifier:

NCT05677048 (https://clinicaltrials.gov/show/NCT05677048)

 

Alexa Kanbergs, MD-ScM, MS, is a Gynecologic Oncology Fellow, MD Anderson Cancer Center.

Photo credit: Rajiv Perera on Unsplash

/by
, , , ,

Holiday Card Uses Humor to Send Serious Message About Colon Cancer Screening

By Matthew Tolzmann

Twenty years ago, my dad was diagnosed with stage 3B colon cancer. He was 60 years old, and he had scheduled his first-ever colonoscopy schedule—but he required colon cancer surgery before the day of his scheduled screening. My dad started chemotherapy, but landed in the hospital when the treatment nearly killed him. A pastor by profession, the only time he didn’t feel nauseous for his year of chemotherapy was when he was preaching.

My dad is a cancer survivor of twenty years now. I’m so grateful that he was given these twenty years and counting, but I feel bad that he had to go through that year of hell. I’m positive that if he were to have had a colonoscopy at age 45, he would never have needed that year of chemotherapy.

Because of this family history, I am considered high risk and my doctor recommended that I have my first colonoscopy when I was 35. My dad actually gave my brother and I colonoscopies for Christmas presents that year! My dad was willing to pay whatever it cost, to save us from what he endured, but I was fortunate that my insurance covered everything. When I was 35, I had incredible insurance through my employer and my first three colonoscopies were covered with basically no extra cost to me. My insurance changed to a marketplace plan and it appeared I was going to have to pay quite a bit because all of my colonoscopies are considered “diagnostic.” The insurance, however, ended up covering most, if not all, of the cost. I was amazed. My insurance has changed again, so in another few years I’ll see if it’s still covered!

Editor’s note: Additional information about screening guidance and insurance coverage can be found here.

My first screening colonoscopy showed several precancerous growths that the doctor removed right then and there. Over the next 15 years, I had three more colonoscopies. The most recent one, at age 50, for the first time ever, resulted in a clean scan with no growths to remove whatsoever. I am positive that colonoscopies have saved me from what my dad went through, or worse.

I’ve had two friends pass away from colon cancer and each death really affected me. In their memory and in honor of my dad, we sent out holiday cards with a call to action to get screened for colon cancer. I love sending out irreverent and creative holiday cards that make people smile, but I felt really good about the higher purpose of this year’s card. If my card can get even one person to get screened and they find even one growth… Then that could translate to one life extended by twenty years… or thirty… or forty…

 

Matthew has a Bachelor’s of music in Music Theory & Composition from the University of Northern Colorado. He has been the violin photographer for Bein & Fushi Rare Violins since the year 2000 and has photographed some of the world’s most valuable stringed instruments. Matthew is also an author and an artist and is currently writing and illustrating a nature science book as well as several collections of humorous essays. He lives in Chicago with his wife, Andrea, and his youngest son, Peter. His oldest son, Simon, is in college in Colorado.

/by