October 8, 2023
CMV Leadership Work Group
Time: 11:00 AM - 12:00 PM
Summary: This instructional session is geared towards organizational leaders (managers/directors/CEOs) of CMV-related advocacy groups. This session will highlight best practices, lessons learned, and challenges associated with addressing leadership needs and effectively managing and leading an advocacy organization during the current social and economic climate. Subtopics of discussion will center on leveraging limited resources to support operational needs, creating impactful programming, and the need for collaborations and partnerships, all while honoring the needs of an ever-growing community of families during uncertain times.
Come Along on Minnesota’s Adventure through Congenital CMV Candyland
Time: 1:00 PM - 4:00 PM
Summary: Let us guide you along the rainbow path of CMV screening in Minnesota and see where it leads you… In January 2022, Minnesota added universal screening for congenital cytomegalovirus (cCMV) to the newborn screening panel; the first infectious disease added to Minnesota’s panel. Since its addition, the Minnesota Department of Health (MDH) has been working on implementation efforts, including stakeholder engagement, determining screening methodology and validation, developing follow-up protocols and guidelines, and creating provider and family resources. On February 6, 2023, Minnesota officially began screening all newborns for cCMV. In this instructional session, each program unit will share the efforts that went into implementing this new screen. The laboratory will share which methods were considered, the selection made, the rationale for the selection, and future improvements under consideration. Operations will share the laboratory information management system changes, HL7 messaging updates, screening card modifications, as well as the communication and education initiatives to internal and external partners. Short-term follow-up will describe their notification and follow-up process, data collection, and laboratory surveillance efforts. Point-of-care will share their collaborative work in developing guidelines for audiologic monitoring of children with confirmed cCMV infection. Longitudinal follow-up will describe their follow-up process for connecting families to information, resources, and support after diagnostic confirmation and review their plans for ongoing data collection as part of public health surveillance. Additionally, MDH staff will provide the following screening data: laboratory performance metrics (positive predictive value and assay sensitivity), turnaround time, prevalence estimates, case outcomes (congenital vs acquired infection), clinical spectrum, follow-up timeliness, and other epidemiologic data. Our journey of twists and turns has taken you through this instructional session of CMV screening and follow-up in Minnesota. “Please stay awhile or come back when you have more time.” You’re always welcome in Minnesota’s Congenital CMV Candyland.
Basic Biology of CMV: Application to Diagnosis, Therapy, and Prevention
Time: 2:00 PM - 3:00 PM
Summary: This session will be a simple, straightforward primer on the basic biology of the CMV virus. A historical time-line of evolving knowledge about CMV will be presented, spanning the initial discovery of the virus through more recent scientific insights into viral genetics, strain variation, and immunity. The ways in which CMV can infect an individual will be reviewed, with emphasis not only on how the virus gets into (and injures) a cell during the process of infection, but also on how this infection pathway can be blocked by antiviral treatments and candidate vaccines. Additionally, the session will address gaps in the understanding of the immune response to CMV, and will provide information on how the virus encodes functions that evade the immune response (in the process complicating the development of protective immunity and the design of vaccines). Clinicians, allied health providers, and families alike should all benefit from this review on the basic biology of CMV. This instructional session should serve as a valuable introduction for the meeting, particularly for those attendees who may have a limited knowledge of the virus itself. The viral correlates of transmission and pathogenesis will be considered against the broader context of other congenital viral infections. The format will be highly interactive with blocks of time for questions about: diseases caused by CMV (how does the virus actually injure an individual?); diagnosis (how do we prove someone has a CMV infection?); antiviral drugs and globulins (how do these interventions work?); and vaccines (how does CMV "hide" from the immune system and what does this mean for maternal and fetal infections that occur during pregnancy?). Audiovisual aids will be used to demonstrate concepts of CMV virology.
Hearing Loss in Children with Congenital Cytomegalovirus Infection: Natural History and Antiviral Treatment
Time: 2:00 PM - 3:00 PM
Summary: Congenital cytomegalovirus (CMV) infection occurs in an estimated 4.5 per 1,000 live birth children in the United States, which corresponds to 16,000 infected newborns annually. Approximately 10-15% of infected infants present with a spectrum of mildly to severely symptomatic disease at birth and are at high risk of neurodevelopmental sequelae. Among the 85-90% infants who are asymptomatic at birth, 10-15% will have sensorineural hearing loss (SNHL), at birth or later. Thus, most cases of congenital CMV-related SNHL are expected in infants with asymptomatic congenital CMV infection, who are not typically identified because universal newborn CMV screening is not recommended, and about half of those infants may pass the newborn hearing screening. The American Academy of Pediatrics recommends treatment with valganciclovir for infants with moderate to severe symptomatic congenital CMV disease who can start treatment within 1 month of life. Evidence from randomized controlled trials for antiviral treatment of asymptomatic infants or those in whom SNHL is the only sign is lacking, and so is consensus among experts. This presentation will cover the natural history, risk factors and prevalence of SNHL among children with congenital CMV infection and available evidence and knowledge gaps on short and long-term effects of antiviral treatment for children with congenital CMV-related sensorineural hearing loss.
CMV 101 The Basics and the Updates about Congenital CMV for 2023
Time: 3:00 PM - 4:30 PM
Summary: The basics of congenital CMV will be reviewed, and significant updates for 2023 will be highlighted in this educational overview talk on CMV infection in pregnant persons and congenital CMV in newborns, and CMV in children as they grow. We will discuss CMV epidemiology, transmission, clinical presentations, diagnoses, newborn screening, treatments, prevention, awareness, and advocacy. This session gets you ready for the conference, by updating you on both CMV basics and CMV hot topics.
FREE WORKSHOP: Seizure Recognition and First Aid Certification
Time: 12:30 PM - 2:00 PM
Summary: Background: About 1 out of 10 people may have a seizure during his or her lifetime. That means seizures are common, and public health professionals might need to help someone during or after a seizure. However, many people do not know what to do when a person has a seizure leading to adverse outcomes or inappropriate treatment. Epilepsy is a chronic disease and a disorder of the brain that causes seizures. In 2015, 1.2% of the total US population had active epilepsy. This is about 3.4 million people with epilepsy nationwide: 3 million adults and 470,000 children. Epilepsy is the 4th most common neurological problem yet diagnosis and treatment is often delayed or inadequate. Fifty-six percent of people reporting seizures continue to have seizures despite treatment. Additionally, only 1 out of 3 are being treated by a neurologist or epileptologist. These simple facts highlight the disparities in care facing people with seizures and epilepsy that leads to poor quality or delays in epilepsy care. Since public health professionals may encounter people with seizures in any setting, providing up-to-date information on diagnosis, treatment and self-management care may help improve access to epilepsy care. The Institute of Medicine Report on Epilepsy highlighted need for ongoing education of health professionals Methods: For years, the Epilepsy Foundation has partnered with the U.S. Centers for Disease Control and Prevention (CDC) to build nationwide programs to ensure school personnel, first responders, seniors, caregivers and the public are better trained to recognize seizures and administer first aid. For the first time ever, the training is offered as a certification program to the public. The program incorporates the Epilepsy Foundation’s new approach to seizure first aid — Stay.Safe.Side. This training uses adult learning principles to employ a variety of methods and ensure the content and delivery meets the needs of adult learners. This course helps participants activate prior learning, establish new information, and give learners opportunities to apply their new learning. The modules include a mix of lecture to represent content, terms, and concepts and a variety of interactive activities such as exercises, group discussions, knowledge checks, and scenarios to reinforce vital information. Real life seizure video footage and seizure first aid video demonstrations and images also convey key concepts and demonstration of skills. It is expected that participants will actively participate in training exercises, discussions, demonstrations and other activities to ensure that learning objectives will be met. Results: Since March 2020, 28,268 individuals have been certified in Seizure First Aid. The training has been converted to live on-line sessions due to COVID-19 physical distancing guidelines. Certified training participants represent the entire United States, including Puerto Rico. Several participants from outside of the United States have also been trained. More than 115 certified trainees completed the additional training requirements to become Seizure First Aid instructors. Conclusion: The Foundation’s Seizure First Aid Training is the only certification training program that ensures the general public may learn how to assist and supports the more than 3.4 million people living with epilepsy in the US. By offering Seizure First Aid Training to certified health education specialists, the Foundation will make certain the public health and health education workforce is better prepared to assure a Seizure Safe Nation.