Frequently Asked Questions
YOUR QUESTIONS ANSWERED
The COMPPASS Registry is a groundbreaking initiative designed to improve the lives of children and families affected by perinatal invasive Group B Streptococcus (iGBS). Whether you're considering participation or seeking more information, this FAQ page provides clear and concise answers to the most common questions about the registry. From enrollment and data collection to privacy and study goals, we aim to address your concerns and ensure you feel informed and confident in your decision to contribute to this vital research effort.
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1. What is the COMPPASS Registry? The COMPPASS Registry is a national research initiative focused on understanding and addressing the long-term health outcomes of children affected by perinatal invasive Group B Streptococcus (iGBS). It collects data from parents, caregivers, and healthcare providers to support future interventions and improve care strategies.
2. Who can participate in the registry? Parents and caregivers of children affected by perinatal iGBS, as well as parents who have experienced a stillbirth or the loss of a child due to iGBS are eligible to participate.
3. How do I join the registry? Interested participants can enroll through our secure online platform. The enrollment process includes creating a username and password, reviewing the consent form, and completing the necessary forms and surveys.
4. Why is the consent process online? The online consent process ensures accessibility for participants within and outside the U.S. and allows you to review and sign the consent form securely at your convenience. Your username and password serve as a proxy for a traditional wet-ink signature.
5. What information will be collected? The registry collects data on children’s health outcomes, neurodevelopmental progress, and healthcare needs, as well as relevant family health and demographic information. All data is stored securely and used solely for research purposes.
6. How will my information be protected? We prioritize participant confidentiality and data security. All information is stored in a secure, encrypted database and is accessible only to authorized research personnel. Identifiable information is never shared without your explicit consent.
7. What is the goal of the COMPPASS Registry? The registry aims to improve understanding of the long-term impacts of perinatal iGBS, identify gaps in care, and support the development of better treatment and intervention strategies for affected children and their families.
8. Are there any costs or compensation for participating? There are no costs associated with participation. While there may not be direct compensation, your involvement contributes significantly to advancing research and improving care for children and families affected by iGBS.
9. Can I withdraw from the registry after enrolling? Yes, participation in the registry is voluntary, and you may withdraw at any time without penalty. To do so, simply contact our registry support team.
10. How will the results of the registry be used? Data collected in the registry will be analyzed to identify trends, gaps, and needs in the care of children affected by iGBS. Findings will be used to inform healthcare policies, interventions, and future research.
11. Who oversees the COMPPASS Registry? The registry is managed by a multidisciplinary team of researchers, healthcare professionals, and data specialists. All activities are conducted in compliance with ethical guidelines and overseen by an Institutional Review Board (IRB).
12. How can I get more information or support? For additional questions or assistance, please contact our registry team by submitting a request on our Contact page. We’re here to help!