Research Studies

Study Name: STARS – Stand Together Against Prolonged Seizures

Study Design: Clinical research study evaluating an investigational treatment for prolonged seizures.

Study Stage: Actively Recruiting

Who Can Participate:
Patients who experience prolonged epileptic seizures, such as:

  • Focal seizures lasting 3 minutes or more
  • Flurries of absence or myoclonic seizures lasting 5 minutes or more
  • A focal or myoclonic seizure lasting at least 90 seconds that progresses into a generalized tonic-clonic seizure (total duration 3+ minutes)

Age Range: 18 years and older

Why Participate:

  • Help advance treatment options for long-lasting seizures and contribute to epilepsy research.
  • Participants may transition into the open-label phase to continue receiving the study drug

Principal Investigator: Vijayalakshmi Rajasekaran, MD
Clinical Trial ID: NCT05077904 (https://clinicaltrials.gov/study/NCT05077904)
Contact: Dane Prince, Email: princede2@upmc.edu, Phone: 2624906818


Study Name: X-ACKT: XEN1101 for Primary Generalized Tonic-Clonic Seizures

Study Design: Clinical research study evaluating an investigational treatment for generalized tonic-clonic seizures.

Study Stage: Actively Recruiting

Who Can Participate:
Patients with primary generalized tonic-clonic seizures (PGTCS) that meet the following:

  • Recurrent primary generalized tonic-clonic seizures (NO focal-onset)
  • Experience ≥ 3 generalized seizures in the past 8 weeks
  • Currently taking 1–3 antiseizure medications and stable for ≥1 month

Age Range: 18 years and older

Why Participate:

  • Help advance treatment options for generalized seizures and contribute to epilepsy research.
  • Participants may transition into the open-label phase to continue receiving the study drug

Principal Investigator: Vijayalakshmi Rajasekaran, MD
Clinical Trial ID: NCT05667142 (https://clinicaltrials.gov/study/NCT05667142)
Contact: Dane Prince Email: princede2@upmc.edu, Phone: 2624906818


Study Name: RISE 3:  BHV-7000 in Focal (Partial) Epilepsy

Study Design: Clinical research study evaluating an investigational treatment for adults with focal-onset (partial) seizures.

Study Stage: Upcoming

Who Can Participate:
Patients who experience focal onset seizures and meet the following:

  • Experience ≥ 4 observable focal seizures within a month
  • Currently taking 1–3 antiseizure medications and stable for ≥1 month
  • Have been diagnosed with focal onset epilepsy for at least one year

Age Range: 18 to 75 years old

Why Participate:

  • Contributing to research may advance new treatment options for people with difficult-to-treat focal seizures
  • Participants may transition into the open-label phase to continue receiving the study drug

Principal Investigator: James Castellano, MD, PhD
Clinical Trial ID: NCT06309966 (https://clinicaltrials.gov/study/NCT06309966)
Contact: Dane Prince, Email: princede2@upmc.edu, Phone: 2624906818


Study Name: ALS/​MND Natural History Study Data Repository

Study Design: The ALS/MND Natural History Data Repository/Registry is a multi-site multi-protocol clinic-based natural history study of ALS and other motor neuron disorders (MND).  The study track’s the disease’s natural history in patients with ALS and/or MND through longitudinal data collected from clinic visits.

Study Stage: Actively Recruiting

Who Can Participate:
All people with a confirmed diagnosis of ALS or other MNDs who attend a participating clinic are eligible for inclusion in the data repository.

Age Range: 18 years and older

Why Participate:

Participation in this study will help researchers better understand the natural history of ALS and other motor neuron diseases (MNDs), including the wide variability in disease progression. This knowledge will help guide current treatment and care approaches and support future studies focused on identifying biomarkers for diagnosis and disease progression, as well as developing therapeutic interventions to improve patient care and health outcomes.

Principal Investigator: Tawfiq Al Lahham, MD
Clinical Trial ID: NCT05966038 (https://clinicaltrials.gov/study/NCT05966038)
Contact: Jacquelynn Krugh, Research Manager/Coordinator Email: jonesjr12@upmc.edu Phone: 412-864-2873