Improving our understanding of genomics in cancer
What is the myC Project?
Launched in 2022, myC (my Cancer my Concern) is a CPE initiative that aims to raise awareness of the benefits and values of genomic testing in cancer.
The project is part of our broader goal to improve the management of cancer patients across Europe. Personalised treatment decisions are central to this effort, and genomic testing is an example of current progress in this area.
Awareness and understanding of genomics and genomic testing are still in their infancy, especially in the patient community. To address this, we are undertaking a variety of initiatives, including patient surveys. Our aim is to raise awareness and urge action by EU policy makers for the benefit of cancer patients.
Some of us will benefit from genomic testing.
All of us can help.
Some of us will benefit from genomic testing.
All of us can help.
What is the myC Project?
Launched in 2022, myC (my Cancer my Concern) is a CPE initiative which aims to raise awareness of the benefits and values of genomic testing in cancer.
The project is part of our broader goal to improve the management of cancer patients across Europe. Personalised treatment decisions are key to this effort and genomic testing is an example of current progress in this area.
Awareness and understanding of genomics and genomic testing are still in early stages particularly in the patient community. To address this, we plan several initiatives including patient surveys from which we will build awareness campaigns and pursue calls to action among EU policy makers for the benefit of cancer patients.
Patient survey for genomics and myC breast cancer
The first phase of the myC initiative was a patient survey focusing on early-stage breast cancer. The survey allows us to improve our understanding of the patient journey, as well as the level of knowledge and the way healthcare professionals currently communicate genomic testing to patients.
The results of the survey now guide our tailored activities to raise patient awareness of genomic testing for early-stage breast cancer.
Why genomic testing in breast cancer?
Cancer is an extremely complex disease. An individual breast cancer contains many different alterations based on the unique biology of the patient’s tumor. As a result, certain patients may be more likely than others to develop advanced disease or to respond to certain therapies. Because traditional clinical and pathological features provide only limited insight into these differences at diagnosis, choosing a treatment tailored to individual patients has historically been extremely difficult.
However, this is where genomics – the study of complex sets of tumor genes and how they work together to influence tumor biology – comes in. Because every breast cancer is different, treatment should not be “one size fits all.” Genomics provides important information about the nature of each individual breast cancer in addition to traditional clinical and pathological features such as tumor size or tumor grade. By looking at certain genes within the tumor, genomic tests can help in some treatment decisions, including whether patients are likely to benefit from adjuvant chemotherapy.
Advisory Committee and support
The following experts and patient association representatives were involved in the development of the myC Genomics and Breast Cancer patient survey:
Oncologists
Dr. Fatima CARDOSO (Portugal)
Prof. Francesco COGNETTI (Italy)
Prof. Dr. med. Michael Patrick LUX (Germany)
Dr. Ana SANTABALLA (Spain)
Dr. Richard SIMCOCK (UK)
Dr. Johanna WASSERMAN (France)
Patient Associations/Societies
Ms. Dany BELL – Macmillan Cancer Support (UK)
Ms. Conchi BIURRUN – FECMA (Spain)
Ms. Bianca CASIERI – Susan Komen (Italy)
Ms. Rosanna D’ANTONA – Europa Donna (Italy)
Dr. Csaba DEGI – International Psycho-Oncology Society (IPOS)
Ms. Laure GUÉROULT-ACCOLAS – Patients en Réseau (France)
Dr. Isabel RUBIO – European Society of Breast Cancer Specialists (EUSOMA)
For more information or to help promote the survey in your country, please contact: secretariat@cancerpatientseurope.org
This project is supported by Exact Sciences. CPE maintains full editorial control.
PRIVACY NOTICE
Genomics and Breast Cancer Patient Survey PRIVACY NOTICE – EUROPE & UK
This notice describes Cancer Patients Europe practices and policies regarding the collection, use, storage and disclosure of personal data collected from you if you answer to the questions in the Cancer Patients Europe survey. The survey is part of Cancer Patient Europe`s initiative “My Cancer My Concern (myC)” which aims to raise awareness of the benefits and value of genomic testing in cancer.
Who is Cancer Patients Europe (CPE)?
CPE means Cancer Patient Europe and is a non-profit-organization based in Belgium. In this notice, ‘we’, ‘us’, and ‘ours’ refer to CPE. CPE is the Controller of the data you provide us.
What personal data (health information if applicable) do we collect from you?
When you answer the questions of the survey, you will be sharing with us the following information: level of awareness around genomics, genomic testing and in particular its value in breast cancer, your breast cancer journey, and the health care professional’s communication around genomic testing. We do not require to share with us any information that could identify you.
What do we use your personal data (health information if applicable for?
We will use your information to raise awareness of the benefits and value of genomic testing in cancer. Your personal data disclosed to us will only be used for this survey and you will not receive communication from us pertaining to this collection of data.
What is our legal basis for using your information?
Your personal data will be collected under the legal basis of legitimate interest for the purpose of social scientific research, while safeguarding the fundamental rights and interests of the data subject.
Who has access to your information?
Within CPE, your information is available to employees involved in organizing the survey in which you are participating. Your information will be recorded by a third-party provider collaborating with CPE to manage this survey. This entity will not be sharing your information with any other party.
Your survey responses will be aggregated with other respondents` answers and widely communicated as survey results. It is not possible for anyone to discover your answers in the results.
How long does CPE keep your information?
Your information is retained as long as needed to satisfy the purposes set forth above. All personal data will be deleted once the survey evaluation has concluded.
Your rights concerning your information
You have the right to:
– access your information,
– have us correct information,
– have us erase or de-identify information,
– have us restrict the processing of your information, or
– object to our processing of your information.
You may exercise these rights at any time by contacting us:
Cancer Patient Europe, Rue de l’Industrie 24, 1000 Brussels, Belgium,
secretary@cancerpatientseurope.org
You have the right as well to lodge a complaint with the competent data protection authority in your country if you believe that CPE has violated your rights.
Click here to participate in the survey