Clinical Trial Radar: Epilepsy & Seizure Research Opportunities

Written By Lisa Costen

At the DYNC1H1 Association, we regularly search ClinicalTrials.gov to help families stay informed about research studies that may be relevant to their loved ones.

This time, we’re highlighting research focused on epilepsy and seizure treatments, including studies enrolling children and adults with Developmental and Epileptic Encephalopathies (DEE).

Anyone can search ClinicalTrials.gov by keyword, and we encourage families to explore it. Research moves forward because of families like yours who are willing to ask questions, learn more, and sometimes participate.

Please note: The DYNC1H1 Association is not involved in the studies listed below, and we are not providing medical advice. Our goal is simply to share information so families are aware of potential opportunities. If you are interested in a study, please contact the study team directly and speak with your medical provider.

DEEp OCEAN Study

Sponsor: Longboard Pharmaceuticals
Locations: Multiple sites worldwide

The DEEp OCEAN study is testing a new medication called LP352 for people with severe epilepsies that begin in childhood, known as Developmental and Epileptic Encephalopathies (DEE).

This is a carefully designed clinical trial that compares the study medication to a placebo (an inactive treatment). Participants go through several phases, including:

  • Screening

  • A dose adjustment (titration) period

  • A maintenance period

  • A taper period

  • Follow-up

The full study lasts about 24 months.

If you would like more information, you can visit:
https://deepdeestudy.com/

You can also contact:
HQ_Medinfo@Lundbeck.com

EMERALD Study: Relutrigine for DEE

Study Name: A Clinical Trial for Participants With DEE to Assess Efficacy, Safety, Tolerability, and PK of Relutrigine (EMERALD)
Locations: United States, Brazil, and Australia

This study is testing a potential new medication called relutrigine to see how safe and effective it is in reducing seizures.

You may be eligible if:

  • You are between 2 and 65 years old

  • You have a diagnosis of a Developmental and Epileptic Encephalopathy (DEE) caused by a genetic mutation or specific syndrome

  • You have had at least 4 motor seizures (seizures involving movement) in the 4 weeks before screening

If you’re unsure whether your child qualifies, your neurologist can help determine eligibility.

To learn more, visit:
https://www.resiliencestudies.com/emerald

You can also search the study on ClinicalTrials.gov using the study ID: NCT06719141

FORESIGHT Study: Predicting Seizures with Wearable Technology

Full Study Name: Forecasting Seizures Using Intelligent Wearable Technology for Health Tracking (Foresight)
Location: Boston, Massachusetts
Sponsor: Empatica, Inc.

This study is exploring whether wearable technology can help predict seizures before they happen.

Participants (age 6 and older) wear a watch-like device called EmbracePlus, which collects physiologic and behavioral data. Researchers are studying whether a system called SeizureWise can accurately forecast convulsive seizures.

In addition to seizure prediction, researchers are also studying how this technology may affect:

  • Quality of life

  • Psychological well-being

  • Clinical and economic outcomes

If your family is open to wearable technology and interested in seizure prediction research, this may be worth exploring.

For more information, contact:
support@empatica.com

You can also search ClinicalTrials.gov using study ID: NCT06275685

Glossary of Research Terms

  • Clinical Trial
    A research study involving people that is designed to answer specific health questions. Clinical trials may test new medications, devices, behavioral therapies, or new approaches to care.

  • Interventional Study
    A study where researchers actively test something new, such as:

    • A new medication

    • A medical device

    • A behavioral therapy

    • A new treatment approach
      Participants are assigned to receive a specific intervention (sometimes compared to a placebo or standard treatment). These studies are designed to evaluate safety and effectiveness.

  • Observational Study
    A study where researchers do not assign a new treatment. Instead, they observe and collect information about participants’ health, symptoms, genetics, or quality of life.
    No experimental medication is given. These studies may include surveys, medical record review, wearable devices, or periodic check-ins.

  • Natural History Study
    A type of observational study that follows individuals over time to understand how a condition changes and progresses.
    These studies help researchers learn:

    • When symptoms typically begin

    • How symptoms change over time

    • What complications may occur

    • What meaningful improvements would look like

    Examples of Natural History Studies you can join as a patient with a DYNC1H1-related disorder:

    • Simons Searchlight – A research program collecting medical history, genetic, and survey data from families affected by rare genetic conditions.

    • Citizen Health – A patient-centered research platform that partners directly with rare disease communities to collect real-world data while making medical health record tracking simpler with the power of a custom-built, HIPAA privacy compliant AI to help collect and sort through complex medical records.

  • Randomized
    Participants are assigned by chance (like flipping a coin) to different study groups. This helps ensure results are fair and unbiased.

  • Placebo
    A substance that looks like the study medication but does not contain active ingredients. It helps researchers compare whether a new treatment truly works.

  • Double-Blind
    A study design where neither participants nor study doctors know who is receiving the study medication versus placebo during the trial. This helps prevent bias.

  • Screening
    The process used to determine whether someone qualifies for a study. This may include reviewing medical records, lab tests, or seizure history.

  • Titration
    The gradual adjustment of a medication dose to find the amount that works best while minimizing side effects.

  • Informed Consent
    The process where the research team explains:

    • The purpose of the study

    • Potential risks and benefits

    • What participation involves

    • Your right to withdraw at any time
      Participation is always voluntary.

Why Research Participation Matters

Every treatment we have today exists because families chose to participate in research.

Clinical trials can:

  • Help researchers better understand rare genetic epilepsies

  • Improve seizure management

  • Advance new therapies

  • Contribute valuable data that benefits the entire community

Participation is always voluntary. Asking questions does not commit you to anything. Simply reaching out to a study team can help you understand whether a trial might be a good fit for your child or family.

We plan to highlight several research opportunities each quarter.

If there are specific aspects of DYNC1H1-related disorders you would like us to focus on in future Clinical Trial Radar posts, please let us know. Your feedback helps guide our advocacy and research efforts.

Together, we can move research forward.

Lisa Costen
Next

Accelerating Research for DYNC1H1-Related Disorders: Our Path to a Cure.