Why?
There is a high need for new approaches to select the most optimal treatment for ROS1 lung cancer. The number of people with ROS1 lung cancer available for studies are limited. Because of the rarity, doing research is difficult. With the help from more ROS1-ders, we can accelerate research in ways no one else can.
Who?
You have been diagnosed with lung cancer with a ROS1 translocation. Because of this translocation, you have been treated with special drug(s). These drugs are called ‘targeted therapy drugs’, also known as ‘tyrosine kinase inhibitors’, or TKIs. Unfortunately for most people, at some point the drugs no longer work. The cancer will progress and the lung tumour starts growing again. You also may suffer from shortness of breath because of pleural effusion under the drugs. This can occur because of new mutations from the tumour. To unravel these potential new mutations, you have been asked by your doctor or will be asked to obtain material of the tumour by biopsy, pleural effusion or surgery. Please consider donating your excess tumour tissue or fluid to OncoLifes in the UMCG for the benefit of medical research. It is entirely up to you whether you participate. It is voluntary.
What?
We hope you want to participate. We want tumour cells that will be obtained through biopsy, pleural effusion or surgery. We use these cells for the realisation of cell cultures.
A cell culture of lung tumour cells is the process by which tumour cells are grown under conditions outside a person. A cell culture helps us to understand the tumour development. It is a promising tool for understanding the behaviour of cancer cells for the development of personalized new drugs. The donation will not affect your treatment and is only a benefit to science and to hopefully help other people in the future.
How?
To create cell cultures, we need living cancer cells donated by people with ROS1 lung cancer. If you have an upcoming biopsy, pleural fluid drainage or cancer surgery, please contact us (ros1@long.umcg.nl). We will contact you and your attending doctor about the possibilities. If possible, we will make arrangements in advance to donate the excess fresh tumour tissue and/or pleural fluid to OncoLifes at the UMCG. We will take the time to inform you and to go through the consent form.
What happens if you participate in this scientific research?
Prior to your biopsy, pleural fluid drainage or cancer surgery, you will receive a test kit for you to take to the hospital. Please make sure to follow the preserve instructions of the test kit.
The test kit for a biopsy or cancer surgery contains:
– Tube with fluid to put in the biopsy or tissue;
– Cooling elements;
– Return shipping label;
– Instructions for your doctor;
– Preserve instructions for shipping the kit back to us.
The test kit for pleural effusion drainage contains:
– Empty tube to put in the pleural effusion;
– Cooling elements;
– Return shipping label;
– Instructions for your doctor;
– Preserve instructions for shipping the kit back to us.
Once the material is collected, we will make sure there is a courier at your treating hospital that will deliver the material to the UMCG. This all will not bring you, or your treating hospital, additional costs.
Are you considering to participate? Don’t hesitate to contact us!
Please contact physician researcher drs. F. Zwierenga and pulmonologist dr. A. van der Wekken to answer all your questions and provide you with additional information about the scientific research. Email: ros1@long.umcg.nl
Are you hesitating and would like to talk to a fellow ROS1der? You can contact Merel Hennink, the founder of ‘Stichting Merels Wereld’ through this website, or you can send an email to her: steun@merelswereld.nl