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
Athlete/Participant
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.
Once you agree to participate and sign the informed consent, we will provide you with a HIPAA authorization form. This form will give the study permission to obtain your medical records andallow us to confirm your diagnosis and eligibility.
We will record information from your medical records at enrollment and then approximately every six months. We will collect information, such as demographics, 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.
You will be asked to fill out 3 short questionnaires on our research database about your diagnosis and symptoms, exercise habits and sports participation, and well-being at enrollment and thenapproximately 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, approximately every six months.
You will not receive any medical treatment by participating in this study.
Just like in the doctor’s office you will receive a HIPAA authorization to list your doctor’sinformation and allow us to obtain your records related to the study. 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 will contact you by text or email to arrange a time to discuss by phone.
We will only request records from your provider that are pertinent to the specific aims of the ORCCA study. Primarily those related to your cardiovascular diagnosis.
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.
Any competitive (collegiate, semi-professional, professional, elite, national) athlete aged 18 to <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 participation.
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.
Your data will never be sold to another 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.
Referring Physician
The ORCCA study aims to assess the process and results of return to sport decision-making and to monitor major adverse cardiovascular events, exercise habits, and the psychosocial well-being among young competitive athletes diagnosed with confirmed cardiovascular conditions or borderline findings with potential increased risk of major adverse cardiovascular events. The results of this work will generate an evidence base to inform future guidelines.
You will not receive individual research results from the patients you refer to the ORCCA study. However, contributors to the ORCCA study, who enroll at least one patient per year, will be recognized as a member of the “ORCCA Study Group”. The ORCCA Study Group will be included on the author byline in subsequent publications with individual names listed at the end of the manuscript and registered in Medline.
• Age 18 to <35 at time of enrollment
• Eligible cardiac diagnosis or eligible borderline finding (diagnosed at any time)
• Participating in competitive sport (collegiate, semi-professional, professional, elite, national) at time of enrollment or within the last 2 years
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; obstructive coronary artery disease; congenital heart disease of moderate or greater severity; 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.
• Go to orccastudy.org and click REGISTER (top right-hand corner)
• Complete the ‘Register a Patient/Athlete’ form
• The study team will reach out directly to the referred patient for consent/HIPAA
• Submit copies of requested medical records to eFax 1-206-520-4727
Yes. Names and contact details will be obtained from providers, with patient permission, to contact potentially eligible patients.
No. The University of Washington has approved this study to obtain contact information for potentially eligible patients for recruiting and screening purposes prior to enrollment. PHI will not be retained from patients who do not qualify or choose not to participate.
Potential participants will be contacted by the study team to answer any questions. Participants will be asked to set up a time to review the study and, if they agree to participate, will be sent an electronic consent to sign before official enrollment and study surveys are distributed.
