Epilepsy Trial, By Invitation NCT06938542 Sponsor: Children's National Research Institute Condition: Epilepsy
Back to Epilepsy

Epilepsy Trial, By Invitation

NCT06938542
By Invitation Not Applicable

voxsanity.com.au · Eligibility summary from public government registries · 18 August 2026 · not medical advice

Who may and may not be able to join

AI generated eligibility summary. Written by an AI model from the official source data and checked on a sample basis. It can contain mistakes, so confirm anything important against the original source. How we use AI

Who may be able to join

For the child:

  • The child is at least 1 year old and under 18 years old at the time of joining.
  • The child is not able to take part in making their own end-of-life care decisions.
  • The child has a rare disease as defined by the NIH's Genetic and Rare Diseases Information Center (GARD).
  • The child does not have a Do Not Resuscitate (DNR) or Allow a Natural Death (AND) order in place.
  • The child is not currently in an Intensive Care Unit (ICU).

For the family caregiver (a parent or guardian):

  • The family caregiver or legal guardian is over 18 years old at the time of joining.
  • The person is the child's family caregiver or legal guardian.
  • The person does not have a known developmental delay.

For a support person (someone chosen by the family caregiver):

  • The support person is over 18 years old at the time of joining.
  • The support person has been chosen by the family caregiver.
  • The support person does not have a known developmental delay.

Who may not be able to join

Each point below is a reason the trial team may not be able to accept someone. It is not a list of requirements to meet.

  • The family caregiver or support person is currently experiencing thoughts of harming others, thoughts of suicide, or a psychotic episode at the time of joining the trial.

Important: Always verify eligibility with the trial site directly before applying.

Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.

This is a simplified plain English summary of the eligibility criteria. Full criteria are set by the trial investigators and may include additional requirements not shown here. Never self-exclude from a trial based on this summary. Contact the trial site directly to confirm your eligibility.
Last synced 18 August 2026
This study is not part of the standard drug-approval phase pathway (for example an observational, device, behavioural, or registry study), so a phase success rate does not apply.

If you need support right now

This page includes language about suicide and self-harm, because that is how the trial's eligibility criteria are written. If reading it has been hard, you do not have to keep going. The services below are free, confidential, and answered by people trained for exactly this.

If you or someone else is in immediate danger, call 000.

  • Lifeline — 24/7 crisis support: 13 11 14
  • Suicide Call Back Service — 24/7 counselling: 1300 659 467
  • 13YARN — 24/7, for Aboriginal and Torres Strait Islander people: 13 92 76
  • Beyond Blue — 24/7 mental health support: 1300 22 4636
  • Kids Helpline — 24/7, free and private for anyone aged 5 to 25: 1800 55 1800
  • headspace — mental health support for 12 to 25 year olds: headspace.org.au
  • Emergency: 000

Outside Australia? The numbers above are Australian and will not work from overseas. Find a Helpline is a free directory of crisis lines in over 130 countries, run by ThroughLine with the International Association for Suicide Prevention. If you are in immediate danger, call your local emergency number.

Voxsanity is not a crisis service, and nothing on this page is medical advice. More Australian services are listed on our support lines page.

If this is close to home

This page includes language about advanced illness, prognosis, or palliative care, because that is how the trial's eligibility criteria are written. Seeing it set out plainly can land hard, whether it is about you or about someone you are caring for. You do not have to be at a crisis point to talk to someone.

  • Griefline — grief and loss counselling, 9am to 6pm weekdays and midday to 6pm weekends (AEST/AEDT): 1300 845 745
  • Carer Gateway — practical and emotional support if you are caring for someone, 8am to 5pm weekdays: 1800 422 737
  • Canteen — for 12 to 25 year olds affected by cancer, their own or a family member's: 1800 945 215
  • Palliative Care Australia — directory of palliative care services near you: palliativecare.org.au
  • Lifeline — 24/7, for any kind of distress, at any hour the services above are closed: 13 11 14

Palliative care is not the same as giving up on treatment, and it is not only for the last weeks of life. It is symptom and comfort care that can run alongside active treatment, including a clinical trial.

Outside Australia? The numbers above are Australian and will not work from overseas. Find a Helpline is a free directory of support and crisis lines in over 130 countries, run by ThroughLine with the International Association for Suicide Prevention.

Voxsanity is not a counselling or medical service, and nothing on this page is medical advice. More Australian services are listed on our support lines page.

GP referral letter

Print a one-page summary to share with your doctor.

Trial details

Status
By Invitation
Phase
Not Applicable
Sponsor
Children's National Research Institute
Registry
ClinicalTrials.gov
Start date
2 October 2025
Est. completion
2 February 2029

Where this trial is recruiting

🇺🇸 United States

Primary endpoints

Family Appraisal of Caregiving for Palliative Care (FACQ-PC); Functional Assessment of Chronic Illness Therapy-Spirituality-12 Version 4 Expanded (FACIT-Sp-EX); Advance Care Plan for Child with Rare Disease Located in the Electronic Health Record (EHR).; Child Healthcare Utilization: initiation of palliative care consultations; Generalized Anxiety Disorder-7 (GAD-7); Patient Health Questionaire-9 (PHQ-9); Child Healthcare Utilization: # of days in palliative care before death.; Child Healthcare Utilization: # of hospitalizations during study participation; Child Healthcare Utilization: # of Em...

Can't join this trial?

Expanded access pathways

If this trial is not available to you, other access pathways may exist. In Australia, the TGA Special Access Scheme allows access to unapproved therapeutic goods for individual patients.

TGA Special Access Scheme information

Find other recruiting trials on ClinicalTrials.gov

Data last synced from ClinicalTrials.gov: 18 August 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.

Trial recruitment status can change without notice between our nightly data updates. Always contact the trial site directly to confirm current recruitment status before making any decisions or travel arrangements.

View original record on ClinicalTrials.gov