Expression IX - Long-term survivors with gynecologic cancers.
Based on the experience with Expression VI - Carolin meets HANNA (ENGOT-ov40/NOGGO S13/Swiss-GO-1), a survey focused on long-term survivors with ovarian cancer, the same survey with some slightly modified questions will be conducted with survivors of other gynecologic cancers
What is the goal of the survey?
The Expression IX survey aims to expand the patient population of long-term survivors with ovaraian cancer to long-term survivors with all gynecologic tumors.
The study aims to survey patients worldwide with gynecologic tumor disease (uterine cancer, cervical cancer, endometrial cancer, and other rare tumors such as gynecologic sarcomas in the uterus or germline tumors such as granulosa cell tumors and Sertoli-Leydig cell tumors) using an anonymized questionnaire.
Those surveyed have been fighting cancer successfully for more than five years, and they are described as long-term survivors.
Unfortunately, most of the patients have a much worse course of the disease. So far, there are only assumptions as to what the different courses of the disease could be. For example, non-smoking, a balanced diet and immunological factors are discussed. The aim of the survey is to identify potential factors that have a positive influence on the course of the disease and life expectancy with these tumors.
The researchers would like to learn from the long-term survivors as part of this survey "Expression IX - Long-term Survival with Gynecological Tumor Disease" - with the goal to give them direct feedback and to be able to make better recommendations to other patients regarding modifiable factors such as diet and exercise.
What is the survey process?
Participation in this survey is voluntary and does not affect further treatment. Women aged 18 years and older, patients diagnosed with gynecologic cancer five years or more ago, can participate in this study. Patients will be given different questionnaires to complete. The data will be used anonymously in the survey evaluation. In order to keep the effort for the patients as low as possible, the number of questions was kept as low as possible. Chemotherapy treatment can lead to cognitive impairments in patients, which can last for years. For this reason, patients are asked to complete an "Everyday memory Test" in addition to the Expression IX questionnaire. Completion of the entire questionnaire takes approximately 1 hour. By taking the test, patients will receive personalized feedback on their diet, physical activity, and resilience (the ability to cope with crises), and will support researchers help other patients with the results of the study.
Are there any risks?
No, it is a survey.
The survey is coordinated by the study group of NOGGO e.V. (North-East German Society of Gynecologic Oncology) and conducted in many hospitals and practices worldwide where patients with gynecologic tumors are treated as part of the ENGOT network. (ENGOT-GYN4/NOGGO/EXPRESSION IX). Furthermore, the survey is supported by renowned patient organizations, institutions and societies.
The data are collected by NOGGO e.V. and stored in a database whose server is located in Germany. Furthermore, the anonymous data are transmitted to the evaluating institute. The questionnaires are kept by NOGGO e.V. for a period of 10 years and then destroyed. The results of the survey may be published in medical literature, but the identity of each participant remains anonymous.
The Swiss GO Trial Group represents the Swiss participation in the study/survey (Swiss-GO-05).
Prof. Dr. med. Dr. h.c. Jalid Sehouli
Dr. Catherine Krause
Expression IX Illustration: Annabel Faroqhi. Image processing: heidesign.com