Register

Step 1

Submit your details below

Step 2

You’ll be contacted by the ORCCA study team

Step 3

Complete Informed Consent and HIPAA authorization forms

Step 4

Enroll in the study and complete questionnaires

Register with us to help monitor clinical outcomes in competitive athletes diagnosed with heart conditions. All potential participants will be contacted by our study team and provided more information and informed consent before enrolling. Participants receive a gift card for completing our surveys.

If you would like more information before registering please contact us.

FAQs

This is a registry study, meaning researchers will collect data from young athletes with cardiac disorders over time to learn more about the condition. The researchers will compile a complete medical history of young competitive athletes with a cardiac disorder that places them at risk of sudden cardiac arrest to guide future care and treatment options.

Before we enroll anyone, we will ask for a confirmation of your cardiovascular diagnosis. We will then ask that you sign a consent form and HIPAA authorization form, which will give the study permission to obtain your medical records.
We will record information from your medical records at your initial enrollment and then approximately every six months. We will record some information about you, like age and race, your diagnostic testing, any cardiac events, and cardiovascular symptoms. We will also record
your exercise habits and sports participation. This information will be uploaded and stored in a secure research database. The research team may monitor your health and progress through reviewing your medical records while still enrolled in the study.
We would also like you to fill out 3 short questionnaires on our research database about your diagnosis and symptoms, exercise habits and sports participation, and well-being at your initial enrollment and then approximately every six months. We will give you a $100 gift card when
you enroll and a $50 gift card each time you complete the study questionnaires.
If we cannot find certain pieces of information from your medical records, we may need to ask you questions about your health history and your family health history. We would contact you by text or email to arrange a time to discuss by phone.
You will not receive any medical treatment by participating in this study.

Provider offices are used to releasing medical records. We will work with your provider’s office to make it as easy as possible for them to release your records.

This study will not generate individual results that will benefit patients. As we analyze the data and publish any findings, we will post them to the ORCCA study website.

If you are interested in taking part in the study or if you would like more information, please contact the study team at 206-598-3294. You can also contact us using the online forms at www.orccastudy.org.

Any competitive athlete age 18-35 who has a cardiovascular diagnosis associated with sudden cardiac arrest or cardiac abnormality of uncertain significance. This also includes athletes that returned to sport, stopped, or were excluded from sport.

Athletes diagnosed with a cardiovascular condition at risk of a major adverse cardiovascular event are eligible to participate. These conditions include: cardiomyopathy (i.e., hypertrophic, dilated, arrhythmogenic); primary electrical disease (i.e., long QT syndrome, CPVT, WPW); myocarditis; coronary artery anomaly; coronary artery disease; congenital heart disease; serious valvular heart disease; and aortopathy (i.e., Marfan or Loeys-Dietz syndrome).

Some borderline cardiovascular findings are also eligible and include: a markedly abnormal ECG with normal cardiac imaging; isolated left ventricular hypertrophy (14-16 mm M, 13-14 mm F); isolated aortic dilatation (40-44 mm M, 34-39 mm F); subclinical ventricular scar or late-gadolinium enhancement on cardiac MRI; non-compacted LV myocardium with concerns for underlying cardiomyopathy; and genotype positive/phenotype negative for a known pathologic variant of genetic cardiomyopathy or channelopathy.

All study data are stored on secure, encrypted servers at the University of Washington. All of the information you provide will be confidential. Individuals and even the team someone is on would not be identifiable in this dataset.

No – the research study data will not be sold to any other entity.

The information that we obtain from you for this study might be used for future studies or shared with another researcher. We will remove anything that might identify you from the information before sharing any research study data.

Being part of the study is voluntary and you can change your mind at any time. This will not affect your status on your team sport.

Want to know more about the human subjects research review process at the University of Washington?
LEARN MORE