Blog

NSR-DEV study visits are done! 

As you may remember, NSR-DEV started in 2020 during the peak of the COVID-19 pandemic. Despite many challenges, we successfully enrolled 188 participants across the U.S. and completed 113 in-person visits. Together, we have reached our research goals! The information we learn from your participation can help improve care and support for future families facing similar challenges. Stay tuned for more updates as we continue to analyze the data in the coming months. Thank you for being a part of this journey with us! 

NSR-RISE preliminary findings

We are excited to share that we have identified five biomarkers with strong links to future epilepsy. While these findings are preliminary, they are promising. In the coming months, we will look more closely at these biomarkers to better understand their role in the development of epilepsy and possible future treatments for children with neonatal seizures. We want to express our heartfelt thank you to all participating families. These discoveries would not have been possible without your support. We look forward to keeping you updated as we continue our analysis. 

NSR-GENE: Where are your genetic samples? 

If you and your child provided saliva samples, they are being processed at our UCSF lab for DNA extraction and at the Broad Institute for DNA sequencing. Over the next few months, our research team will carefully analyze the data from these samples. If we find any important results and you have opted to be informed of incidental findings, your family will receive a report from your local team. Please note that the genetic testing is for approved research purposes only. If you or your child receives a positive test result, you may need to follow up with your clinical team for further testing. We recommend discussing any findings with your healthcare provider.

Question Prompt List

Parents of neonates with seizures may be unsure about what questions to ask the healthcare team. Studies show that sharing a list of possible questions can make it easier for parents to start conversations with members of the care team. The Neonatal Seizure Registry has created a Question Prompt List (QPL) with common questions that parents have found helpful during the neonatal period.

The questions are divided into five categories: 1) Understanding my baby’s seizure diagnosis, 2) Antiseizure medication, 3) Expectations for the baby’s future, 4) What to do in case of seizures after discharge, and 5) Finding information and support. 

To access the complete QPL and download a copy, please visit our Question Prompt List page.

NSR-GENE recruitment has started—your family may be eligible!

Researchers have identified some reasons why children may develop epilepsy – like severity of the newborn seizures or brain injury – but there are gaps in our knowledge. This new study will collect samples from both biological parents and the child to look for genetic (inherited) risk factors for epilepsy. Samples are easy to collect – a cheek swab for kids and saliva specimen for parents – and can be done during a regularly scheduled clinic visit or in the privacy of your own home. Even if your child has not experienced seizures since the newborn period, your participation is important! You may help doctors understand the risk factors for epilepsy, better diagnose and treat children with early life seizure, and develop new treatments to prevent epilepsy. Local study coordinators will reach out to eligible and interested families soon.

NSR-DEV – Importance of the In Person Visit!

The in-person visit takes place when your child is between 5-6 years old and takes about 1-3 hours. During this visit, a healthcare professional administers two neurodevelopmental assessments at your local participating hospital. After the study visit, you will receive a report that explains the results. These assessments are key to helping researchers understand the range of strengths and weaknesses of the school age children who had newborn seizures. To better counsel families, we need to follow as many children as possible! Please contact your local team to schedule the in person visit. We will do our best to accommodate your schedule and special needs so that your child can participate.

NSR evaluates Feeding and Developmental Outcomes After Neonatal Seizures

Impact of our work together during COVID-19

New Funding for the Neonatal Seizure Registry

COVID Disruptions to Developmental Services

In a recently published study, Neonatal Seizure Registry researchers found nine out of 10 children experienced a disruption in developmental services (e.g., physical therapy, occupational therapy, feeding therapy) due to the COVID-19 pandemic. For three out of four familes, in-person services were no longer available. As services resume post-pandemic, developmental therapies may need to be tailored to make up for the loss of services for children with newborn seizures.

Parent Well-Being

Despite ongoing symptoms of anxiety and depression in some parents, the results showed an encouraging trend. Overall fewer parents reported symptoms of anxiety and depression than at the time of hospital discharge and parents also reported a moderately high quality of life and positive personal change over time despite ongoing challenges to family coping.

Parents and clinicians should be aware of lasting risks to parent mental health and family coping for families of children with newborn seizures. We developed this infographic to guide clinicians and parents through our results and to encourage families to seek mental health support as needed.

Thanks to participation of families from across the USA, we are pleased to report that the results from our latest Neonatal Seizure Registry study have been published in a top journal! We learned that, for children acute provoked neonatal seizures (i.e., due to brain injury), in most cases, stopping anti-seizure medicine before a child goes home is safe. This is different than the usual practice at many centers, where it is common to prescribe anti-seizure medicines for several months or longer.

We also learned a lot about the challenges that parents of newborns with seizures can face. After being discharged from the hospital, many families experienced stressors related to finances, mood, coping, navigating uncertainty, and adapting family life. To help support families, we developed the infographic included in this post, which includes resources to help parents support themselves and their families.

Resources for Parents

We know the COVID-19 pandemic has impacted family life for almost everyone. Many parents just haven’t had the time or energy to think about participating in studies, even though they know the studies are important. Our research coordinators are available to help make enrolling and completing follow-ups in the Neonatal Seizure Registry studies as easy as possible, whether that means navigating the websites or reading questions on the phone. Every participating family is important to our work. The information we learn from each and every child is valuable to our shared long-term goal of preventing disability and epilepsy, and helping every child with neonatal seizures reach their full potential