Patient Wisdom

Patient Wisdom

Question 13: How have you benefited from being a part of a patient registry? 

 

Factoid: The Collaborative Group of the Americas on Inherited Colorectal Cancer hosts a list of registries. Look to see if there is one near you! 

They are arranging the Genetic screening for my son, and help to coordinate my care, and also to see if there is any sign in other family members. - Daniel Stapely

 

I have been very fortunate to qualify for numerous clinical trials thanks to signing up with the Hereditary Colon Cancer Registries. Had I not signed up with the registries, I wouldn't have known about the clinical trials. - Betty Starr

 

Yes, my entire family qualified for free genetic testing after my father, sister and I were tested positive. - Linda Warner

 

Newly registered - so here in the beginning I have found it valuable to see what research is being done, receiving quarterly newsletters, articles, information etc.. I am a strong believer in knowledge is power. Whatever I can do to help the cause I will do. I will control how FAP affects me - it will not control me! - Michelle Sutter

 

Contacted about existing, and upcoming studies, that I might qualify for. - Kelly Livingston

 

They send us a newsletter of thing going on concerning cancer, tests, and other important things to know - Melanie Hirschi

 

I received specific information about high risk of thyroid nodules, cancer associated with MAP from Cleveland Clinic's registry. I now get regular thyroid [ultrasound]. I have peace of mind by knowing their are understanding, well-informed experts available to me through the registry to share with me information that can help me manage my disease. - Frank Rider

 

Met others in my area and helped talk to “newbies”. - Charlie Henricks

 

I certainly felt good about sharing symptoms and knowing what others had to offer. I think the connections from person to person need to be much broader and more open as there are really so few with this condition. - Sandra Redlands

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