Ophthalmic Implications of Marfan and Ehlers-Danlos Syndromes

Research Study Summary for Potential Subjects
You are being invited to participate in a research study. To qualify, you must be over the age of 13 or you must be the parent of a child over the age of six. Your child must agree to allow you to answer the survey questions for them. Your participation is voluntary, and you should only participate if you completely understand what the study requires and what the risks of participation are. If you do not meet these criteria, please exit the survey. You should ask the study team any questions you have related to participating before agreeing to join the study. If you have any questions about your rights as a human research participant at any time before, during or after participation, please contact the University of Pennsylvania Institutional Review Board (IRB) at (215) 898-2614 for assistance.

Study Purpose

The goal of this research study is to better understand the ophthalmic symptoms of Marfan and Ehlers-Danlos syndromes to guide research and patient/physician decision making on treatment. You have been invited for participation in the study because of your or your child's history of Marfan syndrome or EDS, or because you do not have these syndromes and are providing your information as part of the control group.

Study Procedures

All data for this study will be collected via an anonymous online survey. All data will be collected and stored securely through REDCap's password-protected platform and made available only to study researchers. Any published data will be presented in aggregate. All survey questions are optional and study subjects may withdraw at any time. Participants will not be compensated for completing the survey.

Duration of Participation

This study involves your completion of a one-time survey taking about 5 minutes.

Risks and Benefits of Participation

You are not expected to get any direct benefit from being in this research study. The anticipated benefit of your participation in this study is providing data on ophthalmic problems faced by patients with Marfan syndrome or EDS, which can aid patient and physician decision-making regarding best treatment.

Risks include emotional distress as participants are asked to reflect on personal medical history, which could, for example, cause feelings of low self-esteem. To mitigate this risk, participation in the survey is optional, all survey questions are optional, and you may withdraw your participation at any time. Other risks include data breach and other breaches of confidentiality, which could result in participants being identified along with their medical history, which could cause, for example, participant embarrassment or discrimination by employers. To mitigate this risk, we will not collect directly identifiable information. We will also store all collected data on a secure cloud-based platform only accessible to the researchers. If you exit the survey before completing it, the data will be destroyed. Any published data will be presented in aggregate.

Future Use of Data

Your/your child's de-identified data will be stored and shared with other researchers and institutions for use in possible future research. There will be no way to trace this data back to you.

Other information

Please review the full consent document attached and save the document for your records. If you are less than 13 years of age, you must ask your parent or legal guardian to review this document before deciding to participate. If you are a parent or legal guardian completing this survey on behalf of your child, please explain the risks and benefits to your child and please obtain their assent before participating in the study.

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