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ELLIE's Project

Quality of Life

Study Contact Information:

 For questions about the study, please contact Lauren Nye, MD by email

Energetics and Lifestyle in Inherited Syndromes (ELLIE’s Study)

About the Study

ELLIE’s Project is designed to look at factors that may affect cancer risk in people with inherited mutations linked to cancer. The study will look at weight, Body Mass Index, metabolism, dietary habits and activity level over the course of people’s life-time.

ELLIE’s study aims to:

  • Gain a better understanding of the baseline lifestyle factors related to nutrition and physical activity in people with a gene mutation.

What the Study Entails

ELLIE’s study is a web-based survey. It is open to eligible people who have a personal email and internet access.  

The web-based survey can be accessed through this hypterlink

  • Then entering code: PYCYHXD3A

The first 1,000 participants will receive a $10.00 e-gift card. The e-gift card will be delivered by email.

Study Locations

The study was developed and designed by Lauren Nye, MD at the University of Kansas Medical Center in Kansas City, KS.  The study will be distributed digitally and can be completed by eligible participants as long as they have internet access.

Study Lead Investigator

  • Lauren Nye, MD
    Medical Director of Cancer Prevention
    University of Kansas Medical Center
    Kansas City, Kansas
This Study is Open To:
  • Male or female 18 years or older that have a genetic mutation in any of the following genes:
    • APC, , , BMPR1A, , , , , CDK4, CDKN4, , DICER1, , GREM1, , , MRE11A, , , MUTYH, , , , , POLD1, POLE, , , , , SMAD4, SMARCA4, or 
  • English or Spanish speaking individuals.
  • Ability of participant OR Legally Authorized Representative (LAR) to understand this study, and participant or LAR willingness to sign a written informed consent
  • Have a personal email address


This Study is Not Open To: