Supporting Families. Saving Lives.
You are being asked to volunteer in a research study called “The Difference in Awareness and Referral Rates for Post-Mortem Genetic Testing and Counseling Among Medical Examiners, PCPs, Cardiologists, Neurologists and other Specialties in Cases of Sudden, Unexpected, Young Death”, conducted by Naomi Horowitz, a graduate student in Genetic Counseling at Long Island University. The purpose of the research is to determine if medical professionals are aware of and referring relatives for post-mortem genetic testing/molecular autopsy in cases of sudden, young (<40 years) deaths. As a participant, you will be asked to answer questions in a survey regarding your knowledge about genetic testing in cases of sudden, young, unexpected death. The survey will be completed online and should take less than 10 minutes of your time. The survey responses will be completely anonymous and no personal identifiable information will be collected. While there is no direct benefit for your participation in the study, it is reasonable to expect that the results may provide information of value for the fields of genetics, pediatrics, cardiology and other medical professions. Your identity as a participant will remain confidential. Your name will not be included in any forms, questionnaires, etc. Data collected will be kept on the database for further research if necessary. Results will be reported only in the aggregate. If you are interested in seeing these results, you may contact the principal investigator. If you have questions about the research you may contact the student investigator, Naomi Horowitz at naomi.horowitz@my.liu.edu or the faculty advisor, Monika Zak (monika.zak@liu.edu). If you have questions concerning your rights as a subject, you may contact the Institutional Review Board Administrator Dr. Lacey Sischo at (516) 299-3591. Your participation in this research is voluntary. Refusal to participate (or discontinue participation) will involve no penalty or loss of benefits to which you are otherwise entitled. Click HERE to take the survey