Supporting Families. Saving Lives.
An online survey: Click here to provide consent and begin the study survey.
Title of Research Study: A Retrospective Analysis of Coping Strategies of Athletes Diagnosed with Long QT Syndrome Whose Sports Participation was Limited or Restricted
IRB Study Number: STU00207522
Principal Investigator: Lisa Castillo, MS, CGC
Supported By: This research is supported by the Northwestern University Graduate Program in Genetic Counseling (NU GPGC)
Key Information about this research study
The following is a short summary of this study to help you decide whether to be a part of this study:
The purpose of this study is to investigate how athletes with a diagnosis of Long QT syndrome have coped with medical recommendation that limited or restricted their sports participation due to a Long QT diagnosis. In addition, this study also hopes to further advance how health care professionals can better provide healthy coping strategies for athletes diagnosed with Long QT syndrome.
You will be asked to complete an online survey. The survey is expected to take 20-30 minutes to complete.
The primary risk of participation is mild, temporary distress or feelings of inadequacy due to answering questions regarding a time shortly after being diagnosed with Long QT syndrome. There are no physical risks associated with participating in this study.
The main benefit of participation is taking part in a study that may provide information to better help future newly diagnosed Long QT athletes cope when they are diagnosed with a sport-limiting/restricting disorder.
Why am I being asked to take part in this research study?
We are asking you to take part in this research study because of your affiliation with the SADS Foundation. We are collaborating with SADS to reach out to individuals who identified as an athlete at the time of their Long QT syndrome diagnosis.
What should I know about this research study?
If I say "Yes, I want to be in this research," what will I have to do?
This survey will ask you questions about your experience coping as an athlete who was recommended to reduce, limit, or stop playing a sport altogether because of a Long QT diagnosis. To answer the study survey, you must be fluent in English and meet the following criteria:
If you do not meet the criteria, you will not be able to take part in the study.
What happens if I do not want to be in this research or if I say "Yes", but I change my mind later?
You can decide not to participate in this research or you can start and then decide to leave the research at any time and it will not be held against you. To do so, simply exit the survey. Any data already collected may be saved and used in the study.
What happens to the information collected for the research?
Efforts will be made to limit the use and disclosure of your personal information, including research study to people who have a need to review this information. We cannot promise complete secrecy. Organizations that may inspect and copy your information include the IRB and other representatives of this institution.
This survey is being hosted by REDCap (Research Electronic Data Capture), which uses a secure connection to keep your information safe. Terms of service addressing confidentiality, may be viewed at www.redcapcloud.com/privacy-policy/.
Upon receiving results of your survey, any possible identifiers will be deleted. You will be identified only by a unique subject number. Your email address will be stored separately from your survey data, and is only being collected for payment purposes. All information will be kept on a password protected computer only accessible by the research team. The results of the research study may be published, but your name will not be used.
After completing the survey, you will have the opportunity to enter a raffle and win one of fifteen $50.00 Visa gift cards.You will have to provide your name, address, and email to enter the raffle. This information will be held in REDCap and is stored in case you win one of the $50 Visa gift cards. Once the raffle is completed and gift cards have been mailed to raffle winners, your name, address, and email will be deleted and removed from REDCap to maintain your privacy.
What else do I need to know?
If you agree to take part in this research study, you will be able to enter a raffle to win one of fifteen $50.00 Visa gift cards. The raffle can be entered by following a link that is provided once the survey is completed. Winners will be contacted via email.
This study is being conducted by the following individuals:
Ruben A. Martin, the student researcher of this study; a graduate student at Northwestern University's Graduate Program in Genetic Counseling (NU GPGC).
Lisa Castillo, MS, CGC, the principal investigator and co-advisor of this study; a genetic counselor at the Center for Genetic Medicine at Northwestern University.
Annie Bao, MS, LMFT, the co-advisor for this study; a faculty member at NU GPGC.
Who can I talk to?
If you have questions, concerns, or complaints, do not hesitate to email Ruben A. Martin at rubenmartin2018@u.northwesttern.edu or the primary investigator Lisa Castillo at lisa.m.castillo@northwestern.edu.
This research has been reviewed and approved by an Institutional Review Board ("IRB"). You may talk to them at (312) 503-9338 or irb@northwestern.edu if: