ROS1ders in Europe, participate

Press Release

Dutch foundation initiates European patient driven research in lung cancer
Stichting Merels Wereld, in cooperation with the University Medical Hospital Groningen (UMCG) and the University of Applied Science (HG), starts a European scientific research in the ROS1+ lung cancer, a rare oncogene driven cancer. Since the ROS1+ lung cancer is rare, it is important to join forces to gain more knowledge on this type of lung cancer.
This initiative is special because it is patient driven: the patient is the initiator as well as the goal of the research. Patient empowerment and initiating research have a positive impact on the survivability.
Stichting Merels Wereld is founded by Merel Hennink, who has the rare ROS1+ lung cancer. Through the network of the foundation with the HG and UMCG a substantial research program is established. This unique collaboration between the Groningen-based universities and a private organisation completes the circle. Through research on diverse levels, more knowledge of this disease will be gained to improve the treatment options. Besides initiating the research program, Stichting Merels Wereld funds it partially. Read more: Research program international

Research
At the Hanzehogeschool, researchers and students are working in cell model systems, to study the resistance mechanisms of the ROS1+ lung cancer. At the UMCG, tumor biopsies of people with the ROS1 fusion are being studied and the effects of different medicines are being tested. Results are shared en used to generate new insights. This research is unique because Europeans with the ROS1 fusion who must have a biopsy, can actively participate. Stichting Merels Wereld bears the costs of the logistics in this process

Stichting Merels Wereld
Stichting Merels Wereld is founded by Merel Hennink. In November 2014 (at age 46 with 2 small children) she got the diagnosis lung cancer, stage four, not curable. People with this rare oncogene driven cancer (ROS1 fusion) call themselves ROS-1ders and are globally organized. Merel, as a ROS1der herself, is mostly active on a national and European scale. With different activities she raises awareness of ROS1 and wants to actively contribute to survival and a manageable quality of life for people with this type of lung cancer.

ROS1ders
ROS1 patients have organized themselves on a global level, the ROS1ders. Besides support, education and empowerment, the ROS1ders started their own research into the ROS1 fusion called: The Global ROS1 initiative. This European initiative is part of this Global Initiative,
Read more: ROS1-ders

More about the ROS1+ lung cancer
The ROS1+ lung cancer is a type of cancer, which is caused by an error in the human DNA. The ROS1 fusion genes in lung cancer is first described in 2012. In the Netherlands, approximately 40 persons are diagnosed with the ROS1+ lung cancer annually. They are relatively young (50 years) and have mostly a non-smoking history.

Why, who, what and how?

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