To continue to serve as a hub for the child neurology community, our organization regularly assesses the needs of our patients, caregivers, and neurologists. That’s why every spring, we conduct our Annual Needs Assessment. We send out two different surveys – one for caregivers and one for neurologists – to learn about their commonalities, obstacles, concerns, and goals. The neurologist and caregiver data we gather from these surveys helps shape our programs.

This year, we received responses from 1,513 caregivers and 152 neurologists. For more context on how we have applied the data in the past, review the takeaways from our 2021 needs assessment data.  

Our team is already hard at work to see how we can channel this year’s caregiver data into new or improved programs to meet the needs we’re hearing about. But while we’re in planning mode, we wanted to share some of the most interesting takeaways from the data. 

We gathered data about shortening the diagnostic odyssey in epilepsy: 

• Epilepsy without an underlying cause is common among respondents. 40% of caregivers responded that they do not know the reason for their child’s epilepsy or seizures and 1/3 of those children had not had genetic testing.  

• • If you are one of the many caregivers in our community who is looking after a child with epilepsy, please visit our Epilepsy Education Hub for helpful resources. 

• There is an opportunity for more discussions about genetic testing between child neurologists and families. 72% of families without a cause for their child’s epilepsy or seizures are interested in getting genetic testing, but only 35% have talked to their neurologist about it. 

• • Are you a caregiver looking for more information on Genetic Testing? Download our ‘Considering Genetic Testing?’ guide for information on costs, benefits, types, and the role of genetic counseling. 

We gathered caregiver data about care coordination and family support: 

• We should continue to push for community-building. 78% of caregivers said that receiving a diagnosis helped them connect to other families, organizations, and communities, and 97% of those who formed connections reported that these groups are helpful. Yet less than 60% of neurologists are referring families to these types of resources.  

• • Our Family Support Program can help connect you to local resources, ones that are specific to your diagnosis, and more.  

We gathered data about clinical trial experiences: 

• Neurologists, and their patients, want more information about clinical trials. More than 80% of neurologists believe that clinical trials are important opportunities for their patients, but only 40% of them regularly consider discussing them, and 86% of caregivers report that their neurologist has never discussed a clinical trial. Neurologists report that the main obstacle to discussing a clinical trial is not having enough information about trials. 

• • Each disorder in our Disorder Directory has a section offering information on research and clinical trials that your child might be a candidate for. 

Thank you to all the caregivers and neurologists who took the time to complete the assessment. We use this annual neurologist and caregiver data to inform our programs, and as always, we want to provide the most helpful tools and resources for those in our community. If you are interested in learning more about the insights we collected, please contact the program team at [email protected].