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Haikda research
Home
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THE BEYOND study

NSW Health invite you to participate in the first NSW based patient - centered clinical study to trial TGA approved cannabis medicine (EPIDYOLEX) for people with rare DEE *.


*  DEE is a rare form of epilepsy  characterized by recurrent, unprovoked seizures.   

CONNECT WITH US

Connect with our senior clinicians and NSW health to schedule an appointment.

CONNECT NOW

ABOUT THE BEYOND CLINICAL TRIAL

PURPOSE

To evaluate the safety and effectiveness of TGA approved cannabis (Epidyolex) in reducing seizures and quality of life.

DURATION

10 months 

ONLINE APPOINTMENTS

  • All senior neurologist appointments are online 
  • Medicine will be delivered to your home with education from a pharmacist
  • All personalised nurse appointments are in your home 
  • No paper diaries
  • Reimbursement offered for all appointments
  • 24 hour support

ask a question

ABOUT EPIDYOLEX

Cannabis medicine (Epidyolex) has some evidence of efficacy when used as an adjuvant to other anti epileptic therapy.  Most published clinical and pre-clinical data on efficacy in epilepsy is with Cannabis medicine in children and adults with rare epilepsy such as DEE. 

PUBLISHED RESEARCH IN TUBEROUS SCLEROSIS
TGA APPROVAL FOR USE IN LENNOX GAUSTET & Dravet Syndrome
PUBLISHED RESEARCH IN CDKL5 deficiency disorder and Aicardi, Dup15q, and Doose syndromes
PUBLISHED RESEARCH IN OTHER EPILEPSY SYNDROMES

YOUR CHILD OR THE PERSON YOU'RE CARING FOR may be ELIGible

  • Aged 2- 65 years old
  • Have Developmental and Epileptic Encephalopathy (DEE)
  • Have countable motor seizures.
  • Agree to complete the procedures and agree to sign the informed consent.


* Patients will need to pass a 10 min screening session

REGISTER YOUR INTEREST

It’s almost here!

We have limited spots. The recruitment closing date is approaching fast. Don’t miss out!

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ENROL NOW

Disclosure

This project is approved by the Hunter New England Local Health District, NSW Health (2024/ETH00559). Your information will not be shared with third parties, including the study sites, clinical research organizations, the Eligibility Review Board, and regulatory or public health agencies. HAIKDA research is a collabora

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