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YOUR VOICE MATTERS
The COMPPASS Registry is committed to advancing research and initiatives to improve the lives of those affected by neonatal invasive Group B Streptococcus (iGBS). We understand that navigating life after an iGBS diagnosis can be challenging, and we’re here to support you while advancing vital research. Below, you’ll find everything you need to know about participating in the iGBS COMPPASS Registry.
AM I ELIGIBLE TO JOIN?
You may be eligible to join the iGBS COMPPASS Registry if:
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You are a parent or guardian of a child who has experienced invasive Group B Streptococcus (iGBS)
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Your child was diagnosed with iGBS at any stage: during pregnancy, at birth, or later in infancy.
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Your child is under the age of 19 years
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You have experienced a stillbirth or the loss of a child following birth due to iGBS
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You consent to share information about your child’s health and development to help advance research.
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Participation is open to families globally, and we aim to include diverse experiences to ensure that our research benefits all affected communities.
WHAT INFORMATION WILL BE COLLECTED?
Participating in the COMPPASS Registry involves sharing important details to help us better understand the impacts of invasive Group B Streptococcus (iGBS). We will collect information about your pregnancy and obstetric experience, details about your child’s iGBS infection, and follow-up surveys exploring their health outcomes and the broader impact iGBS has had on you and your family.
You will also have the opportunity to complete specific validated surveys designed to assess developmental milestones, neurodevelopmental progress, and quality of life. This information is critical for shaping future research, improving care, and developing strategies to support families like yours.
Child Behavior Checklist (CBCL)
The CBCL assesses a child’s behavioral and emotional functioning, providing insights into potential challenges such as anxiety, depression, or attention difficulties. It helps identify areas where additional support or interventions may be needed.
Medical Education
Education is key to transforming the landscape of iGBS care. Our initiatives focus on providing medical professionals, caregivers, and families with essential knowledge and resources to enhance the early detection, treatment, and support for neonatal invasive Group B Streptococcus. Click here to access our educational materials.
Policy Influence
Advocating for policy changes is crucial in driving systemic improvements in iGBS prevention and care. The COMPPASS Registry works tirelessly to influence policies that prioritize iGBS research, awareness, and support. Explore our policy advocacy initiatives and the impact of policy changes on iGBS management.
Research Advocacy
Research is at the heart of our advocacy efforts. We strive to raise awareness about the importance of iGBS research and its impact on public health. By advocating for increased research funding and collaboration, we aim to drive positive change in the understanding and management of iGBS.
Global Outreach
The COMPPASS Registry operates on a global scale to reach and engage with diverse communities impacted by iGBS. Through international partnerships and outreach programs, we strive to create a unified global movement dedicated to addressing the challenges and needs of those affected by neonatal invasive Group B Streptococcus.
Collaborative Research
Collaboration is fundamental to advancing the understanding and treatment of iGBS. We actively engage in collaborative research efforts with leading institutions, researchers, and organizations worldwide to accelerate progress in addressing the long-term impacts of neonatal invasive Group B Streptococcus.