Online survey for HBOC gene carriers
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Category: TNBC Forums
Forum Name: TNBC Polls & Surveys
Forum Description: A place to ask questions and survey the community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13857
Printed Date: Mar 26 2026 at 11:30pm
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Topic: Online survey for HBOC gene carriers
Posted By: cknight
Subject: Online survey for HBOC gene carriers
Date Posted: Feb 10 2022 at 11:00am
Researchers with the University of Kansas Cancer Center are seeking Hereditary Breast and Ovarian Cancer (HBOC) genetic mutation carriers to complete a 15-minute online survey. The Energetics and Lifestyle in Inherited Syndromes (ELLIE’s) Project survey study is collecting information on weight, physical activity, dietary habits, and metabolic risk factors to better understand their impact on breast cancer risk and outcomes in HBOC genetic mutation carriers. The first 1,000 participants will receive a $10 Amazon gift card as compensation for their time. One in eight women will develop breast cancer in her lifetime and just over 10% are in the setting of a HBOC gene mutation. Genetic make-up is not a modifiable risk factor, but obesity, nutrition, and physical activity are. This survey information will better help characterize these modifiable risk factors and lead to the development of future research interventions for this special population. Please consider participating if you are: 18 years of age or older
A HBOC genetic mutation carrier with any of the following genetic mutations: APC, ATM, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4, CDKN4, CHEK2, DICER1, EPCAM, GREM1, HOXB13, MLH1, MRE11A, MSH2, MSH6, MUTYH, NBN, NF1, PALB2, PMS2, POLD1, POLE, PTEN, RAD50, RAD51C, RAD51D, SMAD4, SMARCA4, STK11 or TP53
https://redcap.kumc.edu/surveys/?s=39EPHACHPF" rel="nofollow -
More information about this study, and resources for HBOC, can be found https://www.facingourrisk.org/research-clinical-trials/study/84/ellies-project" rel="nofollow - . Have questions? Please reach out! |
Replies:
Posted By: mamawof4
Date Posted: Sep 09 2022 at 8:56am
Is it still open? I can’t get it to work!
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dx 4/9/09 with stage 2a grade 3,one node cancerous, lumpectony,10 radiation treats via mamma site,8 chemo treat with 4 a/c and 4 iexempra thur clinical trial finished 11/25/09 PALB2 gene+
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