10 Participants Needed

Fenfluramine for Infantile Spasms

Recruiting at 2 trial locations
AM
SH
AL
VA
Overseen ByVirginia Allhusen, PhD
Age: < 18
Sex: Any
Trial Phase: Phase 2
Sponsor: University of California, Los Angeles
Must be taking: ACTH, Vigabatrin
No Placebo GroupAll trial participants will receive the active study treatment (no placebo)
Prior Safety DataThis treatment has passed at least one previous human trial
Approved in 2 JurisdictionsThis treatment is already approved in other countries

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial tests a medication called fenfluramine to determine if it helps children with infantile spasms, a type of seizure disorder. The focus is on children whose spasms haven't improved with standard treatments like vigabatrin and ACTH. Participants will begin with a 21-day treatment, and if effective, they may continue for up to 6 months. Eligible children have ongoing spasms despite trying these common treatments. As a Phase 2 trial, this research measures the treatment's effectiveness in an initial, smaller group, offering a chance to benefit from a potentially effective new therapy.

Will I have to stop taking my current medications?

The trial does not specify if you need to stop taking your current medications, but you cannot start or change doses of second-line treatments for infantile spasms within 14 days before the trial. Also, you should not have used any cannabinoid products in the 14 days before the trial.

Is there any evidence suggesting that fenfluramine is likely to be safe for humans?

Research has shown that fenfluramine has been tested for safety in conditions like Dravet Syndrome and Lennox-Gastaut Syndrome. In these studies, patients generally tolerated fenfluramine well. For instance, one study on Lennox-Gastaut Syndrome found that participants taking fenfluramine experienced fewer seizures than those on a placebo, with safety results aligning with previous findings.

Another study demonstrated that long-term use of fenfluramine for Dravet Syndrome was effective and safe. Some side effects occurred, but they were consistent with earlier research.

As this trial closely monitors safety, earlier research suggests some confidence in the treatment's safety. However, like any medication, side effects may occur, so monitoring participants' responses during the trial is crucial.12345

Why do researchers think this study treatment might be promising for infantile spasms?

Fenfluramine is unique because it offers a new approach for treating infantile spasms by utilizing a different mechanism of action. Most treatments for this condition, like ACTH and vigabatrin, work by modulating neurotransmitter activity, but Fenfluramine acts on the serotonin system to reduce seizure activity. Researchers are excited about Fenfluramine because it may provide rapid relief, with potential effectiveness in just 21 days, and offers a longer-term treatment option for patients who respond well. This could be a game-changer for infants with spasms, providing an alternative when current therapies fall short.

What evidence suggests that fenfluramine might be an effective treatment for infantile spasms?

Research shows that fenfluramine can help treat certain seizure disorders. In people with Dravet syndrome, a type of epilepsy, studies have found that fenfluramine greatly reduces seizures. For instance, one study showed that 64.2% of patients responded well, with many experiencing fewer seizures. Another study on patients with Lennox-Gastaut syndrome, another severe form of epilepsy, found that about half of the patients had their seizures reduced by 50% or more. Based on these promising results, this trial will investigate fenfluramine for treating infantile spasms, especially when other treatments don't work.16789

Who Is on the Research Team?

DS

Daniel Shrey, MD

Principal Investigator

Children's Hospital of Orange County

Are You a Good Fit for This Trial?

This trial is for children aged 1 to 3 with infantile spasms that haven't improved after treatment with ACTH and vigabatrin. Kids can't join if they have serious heart problems, used cannabinoids recently, started a new spasm treatment or diet, or got a vagal nerve stimulator in the last few weeks.

Inclusion Criteria

My child is between 1 and 3 years old.
My child has been diagnosed with infantile spasms.
My seizures have not stopped despite treatment with ACTH and vigabatrin.

Exclusion Criteria

You started and kept on a ketogenic diet within 3 months before the screening.
I had a vagal nerve stimulator implanted within the last 14 days.
You have used any products containing cannabinoids in the two weeks before screening.
See 2 more

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants receive fenfluramine treatment for 21 days, with dosage titrated to 0.8 mg/kg/day

3 weeks
Baseline and post-treatment video-EEG visits

Extension

Participants with favorable response may continue treatment for up to 6 months

6 months

Follow-up

Participants are monitored for safety and effectiveness after treatment

4 weeks

What Are the Treatments Tested in This Trial?

Interventions

  • Fenfluramine
Trial Overview The study tests fenfluramine's effectiveness and safety in treating stubborn infantile spasms. Over three weeks, kids will take the drug and have two video-EEGs before and after to see if it works. Responders may continue for six months.
How Is the Trial Designed?
1Treatment groups
Experimental Treatment
Group I: Fenfluramine treatmentExperimental Treatment1 Intervention

Fenfluramine is already approved in United States, European Union for the following indications:

🇺🇸
Approved in United States as Fintepla for:
🇪🇺
Approved in European Union as Fintepla for:

Find a Clinic Near You

Who Is Running the Clinical Trial?

University of California, Los Angeles

Lead Sponsor

Trials
1,594
Recruited
10,430,000+

Children's Hospital of Orange County

Lead Sponsor

Trials
38
Recruited
5,700+

Published Research Related to This Trial

Captagon, a psychostimulant drug, is still being illicitly produced and traded, particularly in Southeast Europe and Asia, with links to terrorist organizations like ISIS, highlighting a significant public health and security concern.
The study found that while traditional e-commerce platforms showed limited results for Captagon sales, the Dark web provided substantial data on its availability, indicating a need for more comprehensive research methods to address the issue of psychoactive drugs in conflict zones.
Captagon: use and trade in the Middle East.Al-Imam, A., Santacroce, R., Roman-Urrestarazu, A., et al.[2022]
Fenetylline (CAPTAGON) has been used therapeutically for over 23 years, particularly in treating hyperkinetic children, and is considered to have a more favorable benefit/risk profile compared to traditional amphetamines.
It exhibits fewer adverse side effects and a lower potential for abuse, making it a safer alternative among central stimulants, although prescription status should be regulated by national authorities.
Fenetylline: therapeutic use, misuse and/or abuse.Kristen, G., Schaefer, A., von Schlichtegroll, A.[2019]
Lisdexamfetamine is a newly approved prodrug for treating ADHD in children aged 6-12, which is converted to active dextroamphetamine in the body, providing a similar therapeutic effect to traditional stimulants.
This medication has a lower potential for abuse compared to conventional stimulants, as it does not produce high levels of dextroamphetamine when misused, making it a safer option for young patients.
Lisdexamfetamine dimesylate for childhood ADHD.Madaan, V.[2017]

Citations

Long‐term safety and effectiveness of fenfluramine in ...We analyzed the long‐term safety and effectiveness of fenfluramine (FFA) in patients with Dravet syndrome (DS) in an open‐label extension (OLE) study.
Epilepsia Publishes Final Analysis of Open-Label ...FINTEPLA was effective in both patients less than six years old and those six years or older. The analysis showed that 64.2% of patients ...
Final analysis from an open-label extension study of ...These results support the long-term safety and effectiveness of fenfluramine in patients with LGS, with no new safety signals identified ...
Interim analysis of an open‐label extension study - PMCAt ~1 year, 51.2% of patients had ≥50% reduction in drop seizure frequency. Fenfluramine may be a safe, effective long‐term option for patients with LGS. 1.
Fenfluramine (Fintepla)Dravet Syndrome, Study to evaluate the safety and effectiveness of Fenfluramine as adjunct therapy in children and young adults with Dravet Syndrome, Phase 3 ...
Efficacy and Safety of Fenfluramine for the Treatment ...In this randomized clinical trial of 263 patients with LGS, use of 0.7-mg/kg/d fenfluramine resulted in a greater reduction in drop seizures than with placebo.
NCT03355209 | A Study to Investigate the Efficacy and ...A Study to Investigate the Efficacy and Safety of ZX008 (Fenfluramine Hydrochloride) as an Adjunctive Therapy in Children and Adults With Lennox-Gastaut ...
UCB announces positive results from GEMZ phase 3 study ...In the study, fenfluramine was generally well-tolerated, and the safety profile was consistent with previous studies on DS/LGS.1 UCB is ...
FINTEPLA® LGS Safety & Adverse ReactionsLearn about the safety and effectiveness of FINTEPLA® in LGS patients from Study 3, a randomized, double-blind, placebo-controlled trial.
Unbiased ResultsWe believe in providing patients with all the options.
Your Data Stays Your DataWe only share your information with the clinical trials you're trying to access.
Verified Trials OnlyAll of our trials are run by licensed doctors, researchers, and healthcare companies.
Terms of Service·Privacy Policy·Cookies·Security