Following the recent webinar on Pre-implantation Genetic Testing (PGT) for LMNA Cardiomyopathies—for which the recording is already available on our website—we would now like to share an important opportunity to contribute to ongoing research.
Researchers at Maastricht University Medical Center+ (MUMC+) are conducting an international survey to better understand how individuals with an LMNA variant think about PGT: what matters to them, what concerns they have, and what support they may need when considering reproductive options.
Your input can directly help improve counseling, communication, and care for LMNA families worldwide.
Who Can Participate?
You are invited to participate if:
- You carry an LMNA variant, and
- You have a heart condition yourself, or someone in your family has an LMNA-related cardiac condition.
It is essential that participants personally carry the LMNA variant.
The questionnaire asks about your personal considerations regarding PGT, your medical history—including any cardiac arrest in yourself or relatives—and any previous pregnancies. Participation takes approximately 15 minutes, and all questions are optional.
The survey will remain open until the end of January 2026, after which the analysis phase will begin.
Participate in the Survey
➡️ Survey link (Qualtrics):
https://maastrichtuniversity.eu.qualtrics.com/jfe/form/SV_6zYF1rjyAFQ6R3o (English)
https://maastrichtuniversity.eu.qualtrics.com/jfe/form/SV_8cOKUWIP71XLJD8 (Dutch)
Your participation—whether or not you would personally consider PGT—is extremely valuable for shaping future support for LMNA families.
Want to Review the Background?
If you missed the session or wish to revisit the information, the webinar recording on PGT for LMNA cardiomyopathies is available here.
The research team also provides an information video on PGT and a transcript of the tutorial, here.
The participant information sheets are available in both English and Dutch.
Questions?
For questions about the study, please contact the research team at:
isa.faassen@mumc.nl or info@lmnacardiac.org.