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Dear PACES Members, please see below from Balaji:
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A lot of work has gone into decision-making around which patients with hypertrophic cardiomyopathy (HCM) should receive an implantable cardioverter / defibrillator (ICD) for primary prevention. You are invited to participate in this research study because we want to understand the approach of physicians like you to risk stratification for sudden cardiac death (SCD) in children and adolescents with HCM. Please find survey link here.
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We are interested in your center’s / practice’s decision-making. Therefore, if you are the primary decision-maker for or against an ICD, it would be greatly appreciated if you could fill out the brief survey below which will take ~5 mins to complete. We understand that ICD decisions for primary prevention are often controversial and the result of a group discussion; we are looking for the person who synthesizes the available information at your center and makes the final decision in these controversial cases. If you are not one of the primary-decision makers regarding ICDs, kindly forward this link to the colleague(s) who is/are the most appropriate person(s) to provide this information for your center or reply to us with their contact information.
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IRB information: This is a survey/questionnaire research study which has oversight by the Oregon Health & Science University Institutional Review Board: It will take approximately 5 minutes to complete. There is no benefit to you from participating in this study. You will not receive any payment. Completion of the survey is optional. This study is categorized as minimal risk. We will be asking you to forward this survey to or share with us the email address of your colleague/s who meet the criterion above for participation. Since data is entered anonymously, your data cannot be withdrawn. All study responses will be handled confidentially, and participant identities or email addresses will be kept strictly confidential, accessible only to members of the study team. If you have any concerns or complaints about participating in this study, or if you have any privacy related complaints, please contact the IRB at Oregon Health & Science University at (503) 494-7887 or irb@ohsu.edu. You may also submit a report to the OHSU Integrity Hotline online at https://secure.ethicspoint.com/domain/media/en/gui/18915/index.html or by calling toll-free (877) 733-8313 (anonymous and available 24 hours a day, 7 days a week). For other questions or concerns, please contact the study team (see below).
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This survey will close on July 31. Thank you very much for your participation!
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Please reach out to Seshadri Balaji with any questions.
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Seshadri Balaji MBBS, MRCP(UK), PhD, FHRS
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Oregon Health & Science University
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