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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 WILL PARTICIPATION IN THE REGISTRY REQUIRE?
As a parent or caregiver of a child affected by iGBS, you’ll play an important role in advancing research on Group B Streptococcus (GBS). Participation will involve:
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providing basic information about the pregnancy
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providing basic information about your child's health history and development
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occasionally completing follow-up surveys exploring your child's health outcomes and the broader impact iGBS has had on you and your family.
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You and your child will be able to participate in the Registry until they turn 18 years of age.
Your involvement is completely voluntary, and you can decide how much information you are comfortable sharing.
We are committed to making the process straightforward and respectful of your time while ensuring your input helps shape meaningful discoveries for families affected by GBS.
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.
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The following validated surveys have been incorporated into the Registry and are designed to assess developmental milestones, neurodevelopmental progress, and quality of life. Parents and caregivers will be able to complete these surveys at various timepoints over the course of their participation in the registry. Completed surveys will be available for download for parents through their secure My Registry dashboard within the Registry Portal. Further information about each validated survey can be found at the links provided.
The Washington Group / UNICEF Child Functioning Module (CFM)
The CFM provides a detailed assessment of how children perform in key functional domains, such as learning, communication, and self-care. It is tailored to provide a comprehensive understanding of a child’s abilities in a real-world context.
HOW WILL YOUR INFORMATION BE USED?
Your privacy is our top priority. All information registry participants provide will be securely stored and protected using advanced encryption methods to ensure confidentiality.
Only de-identified data—information stripped of any personal details that could identify participants—will be aggregated and used to answer critical research questions about invasive Group B Streptococcus (iGBS). This data will help researchers understand iGBS, improve treatment and prevention strategies, and support families affected by the condition.
Rest assured, your personal information will never be shared or used in any way that compromises your privacy.
HOW WILL YOUR INFORMATION BE PROTECTED?
We take the protection of your information seriously. Any personal or health details you share with us will be securely encrypted to keep them safe. Only authorized team members, who follow strict privacy rules, can access this information.
We also use strong security tools, like firewalls and password protections, to guard against unauthorized access. When we analyze data, it is de-identified, meaning your personal details are removed, so your identity stays private.
Regular checks are done to ensure everything is secure. Your privacy and trust are our top priorities.