Financial Impact Study – Living with NETs
Research is vital in improving outcomes for people affected by NETs.
The Unicorn Foundation is always striving to provide opportunities for NET patients to have their say on a range of important issues, and is very pleased to invite you to take part in a study exploring the financial impacts of NeuroEndocrine Tumours (NETs).
Why is the research being conducted?
The purpose of the study is to understand the financial outcomes, and potential burden, for people living with NETs. Families experiencing ongoing follow-up and symptom management of NET cancer can face significant personal medical expenses and time off work. This research will enable researchers to improve awareness of NETs in the medical profession, the general public and most importantly with policy makers. We will be able to demonstrate the financial burden of patients with NETs and we will seek to understand and quantify this issue.
Who is running the project?
Medical oncologists from Brisbane (A/Prof David Wyld), Melbourne (A/Prof Michael Michael), and Sydney (A/Prof Nick Pavlakis), health economics researcher (A/Prof Louisa Gordon), the Unicorn Foundation (Kate Wakelin, Dr John Leyden, Simone Leyden) and Australian Gastro-Intestinal Trials Group (Jan Mumford), with more hospitals to come online in the future.
Who can participate?
Patients with Grade 1 or 2 NETs and are over 18 years of age. Unfortunately patients with phaeochromocytomas/paragangliomas are ineligible to participate at this stage.
What will I be asked to do? Participation is entirely voluntary. The survey can be completed separate to providing consent for Medicare records. Please note that the survey could take up to 20-30 mins, so grab a cup of tea, and know that your contribution is making a difference for the future.
You will be asked to…..
Step 1: complete a one-off 20-30 minute survey. The survey is online and can be completed here : https://labportal.qimr.edu.au/s/3vem
Step 2: provide your consent to release your Medicare records to the researchers (please email netnurse@neuroendocrine.org.au to have this form mailed to you)
What if I have questions?
Please contact Louisa Gordon (07) 3845 3717/ louisa.gordon@qimrberghofer.edu.au, or Kate Wakelin (1300 287 363/ netnurse@neuroendocrine.org.au) if you have any questions.
Has this research been approved by an ethics committee?
Yes, the QIMR Berghofer Medical Research Institute Human Research Ethics Committee and the other hospital site ethics committees have approved this study.
We strongly encourage everyone affected by NETs, who meet the above eligibility, to take part in this important research.
