For this study, the UMCG (UMC Groningen) is asking for help from women who are carriers of the PLN gene mutation (p.(Arg14del) variant). With this research they want to learn more about the wishes and preferences of counseling before, during and after pregnancy. By completing a questionnaire, you can contribute to this medical-scientific research. Participation is voluntary.
Before a pregnancy, there may be one or sometimes several counseling sessions. This will explain what pregnancy means for your heart, what the PLN gene mutation means for pregnancy, and whether there are more risks in pregnancy compared to someone without the PLN gene mutation. Heredity is also discussed and whether medications may be used during pregnancy. Risks and advice for the baby are also a topic.
If you already have children and have had counseling sessions in the past, the UMCG is also curious how you experienced these sessions. They also want to know what kind of care you prefer and from whom. Think about how often there are check-ups and where you would like to give birth. Filling out this questionnaire helps the UMCG get a good picture of patients’ needs and wishes regarding pregnancy. In this way, care can be better tailored.
What does participation in this study involve?
- You complete the questionnaire in one sitting.
- Completing the list takes about 20 minutes.
- You share about your needs and experiences for counseling around pregnancy.
- You share some information about yourself and any previous pregnancies.
- You can complete the questionnaire even if you have never been pregnant.
You can complete the questionnaire by clicking here.
Completing the questionnaire may trigger memories of pregnancy. Both positive and negative emotions may arise. Other than that, there are no specific advantages or disadvantages to participating in this study. Participation is completely voluntary. You can stop completing the questionnaire at any time.
Data and confidentiality
All information collected during this survey is confidential and will be used only for this study. Responses will be stored securely. Only the principal investigators can see who the responses belong to. The data will be stored for 15 years and then destroyed. The UMCG medical ethics review committee has given permission for this study.
Have you completed the list but still decide you do not want to participate? Please contact Ms. S.A. Hogenhout(s.a.hogenhout@umcg.nl), student researcher of this study. If the study has not yet been published, it is still possible to withdraw your participation. You can also use this contact information if you have any doubts or questions about completing the questionnaire.
On behalf of the team involved consisting of Ms. S.A. Hogenhout (student researcher), dr. C.N.H. Abheiden (gynecologist), dr. S.J. Gordijn (gynecologist-perinatologist), dr. J.R. Prins (gynecologist-perinatologist), dr. M.G.P.J. Cox (cardiologist), prof. Dr. P. van der Meer (cardiologist), Dr. K.Y. van Spaendonck-Zwarts (clinical geneticist), Ms. Dr. A Linders, (PLN Foundation), Ms. A. Klinkert (PLN Foundation) and Mr. L. Kerckhaert (PLN Foundation) thank you for your time and attention!