Alternating Hemiplegia of ChildhoodPhase 1/2AHC-SONCT00931164
Sodium Oxybate in Patients With Alternating Hemiplegia of Childhood (AHC-SO)
A Phase 1/2 study testing Sodium Oxybate in people with Alternating Hemiplegia of Childhood, run by University of Utah at 1 site in United States.
Trial summary
WHO: The investigators are recruiting children and young adults to participate in a research study who: 1. Have been diagnosed with Alternating Hemiplegia of Childhood (AHC) 2. Are between the ages of 6 months - 25 years old 3. Have at least three 10-minute-long AHC episodes during a typical week 4. Read more about this study
- Who is it for?
- Ages 6 months to 25 years
- Conditions the study is for
- Alternating Hemiplegia of Childhood
- What is being tested?
- Sodium Oxybate
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 6 participants
- Where
- 1 siteUnited States
- Study dates
- Aug 2009to Sep 2011
- Phase
- Phase 1/2
- Are there results?
- Yes, posted in the registrySummary in the doctors' view
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 6 months to 25 years
- All sexes
- No healthy volunteers
- Child, Adult
Who may be able to join
- Subjects must meet all of the following inclusion criteria.
- AHC classic criteria:
- Onset of symptomatology prior to 18 months of age
- Repeated attacks of hemiplegia involving either side of the body
- Paroxysmal disturbances, including tonic or dystonic spells, oculomotor abnormalities, and various autonomic phenomena, during hemiplegic bouts or in isolation
- Episodes of bilateral hemiplegia or quadriplegia starting either as generalization of a hemiplegic episode or bilateral from the beginning
Show all 17Show fewer
- Immediate disappearance of symptoms upon sleeping, with possible resumption 10-20 minutes after waking
- Evidence of developmental delay and neurologic abnormalities including choreoathetosis, dystonia, or ataxia
- In addition:
- Provision of a complete daily event log for 6 weeks prior to initiation of sodium oxybate therapy, including the: (1) frequency, (2) duration, (3) type, (4) severity of episodes, and (5) therapies, if any, used in an attempt to abort the episode
- Ages 6 months to 25 years at the time of study enrollment
- Minimum of 3 AHC episodes weekly, lasting at least 10 minutes each, on average prior to study enrollment
- Brain neuroimaging studies excluding alternative etiology for symptoms
- Documented absence of epileptiform features on EEG during typical ictal events
- Ability of primary caregivers of study participants to submit online daily AHC Episode Logs indicating frequency and duration of ictal episodes over the entire study period
- Written informed consent from parents/guardians and assent from children 7 years or older
- Girls/women > 12 years of age will be required to be on birth control continuously if they are considered at risk to become pregnant. Those not on birth control will be required to have a screening pregnancy test at baseline, and to confirm their willingness to practice birth control or abstain from sexual activity for the duration of treatment with study medication.
Who cannot join
- Subjects who meet any of the following criteria will be excluded from participation.
- History of hepatic insufficiency, renal insufficiency, significant respiratory disease, cardiac arrhythmia, congenital heart defect, hypertension, or ischemic stroke
- History of allergy/sensitivity to sodium oxybate
- Use of sodium oxybate within 30 days of study enrollment
- Serious illness requiring systemic treatment and/or hospitalization within two weeks prior to study enrollment
- Change in neurologic medication regimen within 30 days of study enrollment.
Show all 11Show fewer
- Inability to stay at the Center for Clinical and Translational Science (CCTS) for 5 days due to behavioral issues
- Unwillingness or inability to travel to study site during the necessary 1 week titration period to determine the most appropriate dose of GHB for subsequent administration
- Noncompliance with AHC Episode Log or study visit requirements
- Sleep apnea not adequately treated with C-PAP and oxygen saturation monitoring prior to drug therapy initiation
- Succinic semialdehyde dehydrogenase deficiency
Trial locations and contacts
1 site in 1 country.
United States1 site
University of Utah Hospital
Salt Lake City, Utah, 84132
About this study
Official title: Single-center Phase I/II Trial of Sodium Oxybate in Patients With Alternating Hemiplegia of Childhood (AHC-SO Trial)
WHO: The investigators are recruiting children and young adults to participate in a research study who:
- Have been diagnosed with Alternating Hemiplegia of Childhood (AHC)
- Are between the ages of 6 months - 25 years old
- Have at least three 10-minute-long AHC episodes during a typical week
- Can commit to 12 weeks of completing of a daily log describing AHC episodes and to a multi-night hospital stay at the University of Utah Center for Clinical and Translational Science (CCTS)
Read more
WHY: The goal of this study is to evaluate whether the study drug can safely and effectively decrease AHC episodes and improve the quality of life of individuals with AHC.
WHAT and WHERE: This study involves at least 12 weeks of completing and submitting daily AHC Episode Logs and a five-day hospital stay at the University of Utah CCTS.
There are 4 phases of the study, and they include:
- Six weeks of daily log completion prior to starting study drug
- Five day stay at the University of Utah CCTS
- Six additional weeks of daily log completion while using study drug at home
- One day clinic visit to the University of Utah for follow up
COMPENSATION:
There is no fee to participate. All procedures performed specifically for this study will be covered by the study and will not be billed to you or your insurance company.
The study drug will be dispensed to you free of charge. Meals and lodging at the study site will be provided free of charge for the study participant and one care provider. Additionally, the research team will assist subjects with booking and obtaining free transportation, such as an airline tickets, to and from the study site.
- Conditions
- Alternating Hemiplegia of Childhood
- Being tested
- Sodium Oxybate
- Keywords
- phase I/II study, effects of sodium oxybate, cohort of 6 children and young adults, AHC
- Medical subject headings
- Alternating hemiplegia of childhood
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Sodium OxybateDrug
dosage is by weight
| Study group | Role | What they receive |
|---|---|---|
| Sodium oxybate | Experimental | * The study is an open-label, Phase I/II trial designed to obtain additional safety and pharmacokinetic parameters for use of sodium oxybate in children and adolescents afflicted with AHC.
* Given the limited number of children carrying the diagnosis of AHC, typical controls will not be available for our study. In lieu of this, the subjective recording of ictal episodes in the 6 week period prior to drug initiation will serve as reference in determining drug efficacy. Receives: Drug: Sodium Oxybate |
What is being measured
The primary outcome is the main question the study is designed to answer.
Time Duration of AHC Episodes
Measured: Week 7
Observed Safety Data During 5-day Hospitalization for Drug Dose Identification
Measured: Week 7
Number of Participants Who Reported Side Effects During Home Drug Maintenance Phase
Measured: 1 year
Secondary outcomes (5)
Mean Daily Percentage of Time That Functional Status is Affected Due to Episodes
Measured: Week 14
Quality of Life Questionnaires
Measured: Week 14
Mood and Behavior Questionnaires
Measured: Week 14
Functional Skills Questionnaires
Measured: Week 14
Neuropsychological Tests
Measured: Week 14
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted2 Jul 2009 (estimated)
- Study startAug 2009
- Primary completionJan 2011
- Study completionSep 2011
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Posted resultsParticipant flow, outcome measures and adverse events reported by the sponsor.
- Publications (43)Papers the sponsor has linked to this study.
- Other trials for Alternating Hemiplegia of ChildhoodStudies of the same condition, open and under way.
- More trials run by University of UtahThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase 1/2
- Primary purpose
- Treatment
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Enrolment
- 6 participants (actual)
Sponsor and investigators
- Lead sponsor
- University of Utah
- Sponsor type
- University, hospital or other
- Collaborators
- Alternating Hemiplegia of Childhood Foundation, Jazz Pharmaceuticals
- Responsible party
- Principal investigator, Kathryn Swoboda, University of Utah
- Investigators
- Kathryn J. Swoboda, M.D., Principal investigator, University of Utah/Primary Children's Medical Center
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00931164
- Sponsor's protocol ID
- 32164
- Other IDs
- 103932
- Acronym
- AHC-SO
- Status last verified
- Mar 2014
- First submitted
- 30 Jun 2009
- Last updated
- 31 Mar 2014
- Results posted
- Yes, on ClinicalTrials.gov
- Data monitoring committee
- Yes
Publications
Addolorato G, Cibin M, Capristo E, Beghe F, Gessa G, Stefanini GF, Gasbarrini G. Maintaining abstinence from alcohol with gamma-hydroxybutyric acid. Lancet. 1998 Jan 3;351(9095):38. doi: 10.1016/s0140-6736(05)78088-0. No abstract available.
PubMed 9433435A 12-month, open-label, multicenter extension trial of orally administered sodium oxybate for the treatment of narcolepsy. Sleep. 2003 Feb 1;26(1):31-5.
PubMed 12627729Arnold DL, Silver K, Andermann F. Evidence for mitochondrial dysfunction in patients with alternating hemiplegia of childhood. Ann Neurol. 1993 Jun;33(6):604-7. doi: 10.1002/ana.410330608.
PubMed 8498840Bourgeois M, Aicardi J, Goutieres F. Alternating hemiplegia of childhood. J Pediatr. 1993 May;122(5 Pt 1):673-9. doi: 10.1016/s0022-3476(06)80003-x.
PubMed 8496742Bourgeois M, Aicardi J. The treatment of alternating hemiplegia of childhood with flunarizine: experience with 17 patients. Alternating Hemiplegia of Childhood, edited by F Andermann, J Aicardi, and F Vigevano. 1995;191-194.
Caputo F, Addolorato G, Stoppo M, Francini S, Vignoli T, Lorenzini F, Del Re A, Comaschi C, Andreone P, Trevisani F, Bernardi M; Alcohol Treatment Study Group. Comparing and combining gamma-hydroxybutyric acid (GHB) and naltrexone in maintaining abstinence from alcohol: an open randomised comparative study. Eur Neuropsychopharmacol. 2007 Dec;17(12):781-9. doi: 10.1016/j.euroneuro.2007.04.008. Epub 2007 Jul 3.
PubMed 17611081Casaer P. Flunarizine in alternating hemiplegia in childhood. An international study in 12 children. Neuropediatrics. 1987 Nov;18(4):191-5. doi: 10.1055/s-2008-1052478.
PubMed 3320807Casaer P, Azou M. Flunarizine in alternating hemiplegia in childhood. Lancet. 1984 Sep 8;2(8402):579. doi: 10.1016/s0140-6736(84)90794-3. No abstract available.
PubMed 6147627Defossez M, Le Bec G, Sancier A, Manelfe C, Espagno MT, Bouzat A, Sevely A. [Neuro-sedation and cranial C.-T. scan in infants and children (author's transl)]. Anesth Analg (Paris). 1979;36(11-12):525-9. French.
PubMed 554477Ferrara SD, Giorgetti R, Zancaner S, Orlando R, Tagliabracci A, Cavarzeran F, Palatini P. Effects of single dose of gamma-hydroxybutyric acid and lorazepam on psychomotor performance and subjective feelings in healthy volunteers. Eur J Clin Pharmacol. 1999 Jan;54(11):821-7. doi: 10.1007/s002280050560.
PubMed 10027654Frucht SJ, Bordelon Y, Houghton WH, Reardan D. A pilot tolerability and efficacy trial of sodium oxybate in ethanol-responsive movement disorders. Mov Disord. 2005 Oct;20(10):1330-7. doi: 10.1002/mds.20605.
PubMed 15986420Haan J, Kors EE, Terwindt GM, Vermeulen FL, Vergouwe MN, van den Maagdenberg AM, Gill DS, Pascual J, Ophoff RA, Frants RR, Ferrari. Alternating hemiplegia of childhood: no mutations in the familial hemiplegic migraine CACNA1A gene. Cephalalgia. 2000 Oct;20(8):696-700. doi: 10.1046/j.0333-1024.2000.00095.x.
PubMed 11167897Hunter AS, Long WJ, Ryrie CG. An evaluation of gamma-hydroxybutyric acid in paediatric practice. Br J Anaesth. 1971 Jun;43(6):620-8. doi: 10.1093/bja/43.6.620. No abstract available.
PubMed 5089942Jiang W, Chi Z, Ma L, Du B, Shang W, Guo H, Wu W. Topiramate: a new agent for patients with alternating hemiplegia of childhood. Neuropediatrics. 2006 Aug;37(4):229-33. doi: 10.1055/s-2006-924721.
PubMed 17177149Jen J, Yue Q, Nelson SF, Yu H, Litt M, Nutt J, Baloh RW. A novel nonsense mutation in CACNA1A causes episodic ataxia and hemiplegia. Neurology. 1999 Jul 13;53(1):34-7. doi: 10.1212/wnl.53.1.34.
PubMed 10408533
Study at a glance
From the registry record, last updated by the sponsor on 31 Mar 2014. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Single-center Phase I/II Trial of Sodium Oxybate in Patients With Alternating Hemiplegia of Childhood (AHC-SO Trial)
- ClinicalTrials.gov ID
- NCT00931164
- Acronym / sponsor ID
- AHC-SO / 32164
- Conditions
- Alternating Hemiplegia of Childhood
- Keywords
- phase I/II study, effects of sodium oxybate, cohort of 6 children and young adults, AHC
- Phase
- Phase 1/2
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 6 participants (actual)
- Lead sponsor
- University of UtahUniversity, hospital or other
- Collaborators
- Alternating Hemiplegia of Childhood Foundation, Jazz Pharmaceuticals
- Study start
- Aug 2009
- Primary completion
- Jan 2011 (actual)
- Study completion
- Sep 2011 (actual)
- First posted
- 2 Jul 2009 (estimated)
- Results
- Posted 31 Mar 2014
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
WHO: The investigators are recruiting children and young adults to participate in a research study who:
- Have been diagnosed with Alternating Hemiplegia of Childhood (AHC)
- Are between the ages of 6 months - 25 years old
- Have at least three 10-minute-long AHC episodes during a typical week
- Can commit to 12 weeks of completing of a daily log describing AHC episodes and to a multi-night hospital stay at the University of Utah Center for Clinical and Translational Science (CCTS)
WHY: The goal of this study is to evaluate whether the study drug can safely and effectively decrease AHC episodes and improve the quality of life of individuals with AHC.
WHAT and WHERE: This study involves at least 12 weeks of completing and submitting daily AHC Episode Logs and a five-day hospital stay at the University of Utah CCTS.
There are 4 phases of the study, and they include:
- Six weeks of daily log completion prior to starting study drug
- Five day stay at the University of Utah CCTS
- Six additional weeks of daily log completion while using study drug at home
- One day clinic visit to the University of Utah for follow up
COMPENSATION:
There is no fee to participate. All procedures performed specifically for this study will be covered by the study and will not be billed to you or your insurance company.
The study drug will be dispensed to you free of charge. Meals and lodging at the study site will be provided free of charge for the study participant and one care provider. Additionally, the research team will assist subjects with booking and obtaining free transportation, such as an airline tickets, to and from the study site.
Study design
- Primary purpose
- Treatment
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Sodium oxybate | Experimental | Drug: Sodium Oxybate* The study is an open-label, Phase I/II trial designed to obtain additional safety and pharmacokinetic parameters for use of sodium oxybate in children and adolescents afflicted with AHC. * Given the limited number of children carrying the diagnosis of AHC, typical controls will not be available for our study. In lieu of this, the subjective recording of ictal episodes in the 6 week period prior to drug initiation will serve as reference in determining drug efficacy. |
Who may qualify
- Ages
- 6 months to 25 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult
Key inclusion criteria (17 listed)
- Subjects must meet all of the following inclusion criteria.
- AHC classic criteria:
- Provision of a complete daily event log for 6 weeks prior to initiation of sodium oxybate therapy, including the: (1) frequency, (2) duration, (3) type, (4) severity of episodes, and (5) therapies, if any, used in an attempt to abort the episode
- Ages 6 months to 25 years at the time of study enrollment
- Minimum of 3 AHC episodes weekly, lasting at least 10 minutes each, on average prior to study enrollment
Key exclusion criteria (11 listed)
- Subjects who meet any of the following criteria will be excluded from participation.
- History of hepatic insufficiency, renal insufficiency, significant respiratory disease, cardiac arrhythmia, congenital heart defect, hypertension, or ischemic stroke
- History of allergy/sensitivity to sodium oxybate
- Use of sodium oxybate within 30 days of study enrollment
- Serious illness requiring systemic treatment and/or hospitalization within two weeks prior to study enrollment
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Sodium Oxybatedosage is by weight | Drug | Sodium oxybate |
Primary outcome
Time Duration of AHC Episodes
Time frame: Week 7
Observed Safety Data During 5-day Hospitalization for Drug Dose Identification
Time frame: Week 7
Number of Participants Who Reported Side Effects During Home Drug Maintenance Phase
Time frame: 1 year
5 secondary outcomes
Mean Daily Percentage of Time That Functional Status is Affected Due to Episodes
Time frame: Week 14
Quality of Life Questionnaires
Time frame: Week 14
Mood and Behavior Questionnaires
Time frame: Week 14
Functional Skills Questionnaires
Time frame: Week 14
Neuropsychological Tests
Time frame: Week 14
Results and safety
Loading the posted results from ClinicalTrials.gov…
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 31 Mar 2014.
- Posted resultsParticipant flow, baseline, all outcome measures and adverse events.
- Background: PubMed 9433435Addolorato G, Cibin M, Capristo E, Beghe F, Gessa G, Stefanini GF, Gasbarrini G. Maintaining abstinence from alcohol with gamma-hydroxybutyric acid. Lancet. 1998 Jan 3;351(9095):38. doi: 10.1016/s0140-6736(05)78088-0. No abstract available.
- Background: PubMed 12627729A 12-month, open-label, multicenter extension trial of orally administered sodium oxybate for the treatment of narcolepsy. Sleep. 2003 Feb 1;26(1):31-5.
- Background: PubMed 8498840Arnold DL, Silver K, Andermann F. Evidence for mitochondrial dysfunction in patients with alternating hemiplegia of childhood. Ann Neurol. 1993 Jun;33(6):604-7. doi: 10.1002/ana.410330608.
- Background: PubMed 8496742Bourgeois M, Aicardi J, Goutieres F. Alternating hemiplegia of childhood. J Pediatr. 1993 May;122(5 Pt 1):673-9. doi: 10.1016/s0022-3476(06)80003-x.
- BackgroundBourgeois M, Aicardi J. The treatment of alternating hemiplegia of childhood with flunarizine: experience with 17 patients. Alternating Hemiplegia of Childhood, edited by F Andermann, J Aicardi, and F Vigevano. 1995;191-194.
- Background: PubMed 17611081Caputo F, Addolorato G, Stoppo M, Francini S, Vignoli T, Lorenzini F, Del Re A, Comaschi C, Andreone P, Trevisani F, Bernardi M; Alcohol Treatment Study Group. Comparing and combining gamma-hydroxybutyric acid (GHB) and naltrexone in maintaining abstinence from alcohol: an open randomised comparative study. Eur Neuropsychopharmacol. 2007 Dec;17(12):781-9. doi: 10.1016/j.euroneuro.2007.04.008. Epub 2007 Jul 3.
- Background: PubMed 3320807Casaer P. Flunarizine in alternating hemiplegia in childhood. An international study in 12 children. Neuropediatrics. 1987 Nov;18(4):191-5. doi: 10.1055/s-2008-1052478.
- Background: PubMed 6147627Casaer P, Azou M. Flunarizine in alternating hemiplegia in childhood. Lancet. 1984 Sep 8;2(8402):579. doi: 10.1016/s0140-6736(84)90794-3. No abstract available.
- Background: PubMed 554477Defossez M, Le Bec G, Sancier A, Manelfe C, Espagno MT, Bouzat A, Sevely A. [Neuro-sedation and cranial C.-T. scan in infants and children (author's transl)]. Anesth Analg (Paris). 1979;36(11-12):525-9. French.
- Background: PubMed 10027654Ferrara SD, Giorgetti R, Zancaner S, Orlando R, Tagliabracci A, Cavarzeran F, Palatini P. Effects of single dose of gamma-hydroxybutyric acid and lorazepam on psychomotor performance and subjective feelings in healthy volunteers. Eur J Clin Pharmacol. 1999 Jan;54(11):821-7. doi: 10.1007/s002280050560.
- Background: PubMed 15986420Frucht SJ, Bordelon Y, Houghton WH, Reardan D. A pilot tolerability and efficacy trial of sodium oxybate in ethanol-responsive movement disorders. Mov Disord. 2005 Oct;20(10):1330-7. doi: 10.1002/mds.20605.
- Background: PubMed 11167897Haan J, Kors EE, Terwindt GM, Vermeulen FL, Vergouwe MN, van den Maagdenberg AM, Gill DS, Pascual J, Ophoff RA, Frants RR, Ferrari. Alternating hemiplegia of childhood: no mutations in the familial hemiplegic migraine CACNA1A gene. Cephalalgia. 2000 Oct;20(8):696-700. doi: 10.1046/j.0333-1024.2000.00095.x.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Kathryn J. Swoboda, M.D. principal investigator
University of Utah/Primary Children's Medical Center
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A Phase 1/2 study testing Sodium Oxybate in people with Alternating Hemiplegia of Childhood, run by University of Utah at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 17 inclusion and 11 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 31 Mar 2014. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
What does this combined phase mean?
Phase 1 studies test a treatment in a small group of people for the first time or in a new way, mainly to check safety and find the right dose.
Phase 2 studies give the treatment to a larger group to see whether it has the intended effect and to keep checking safety.
Not every study follows the same path, and some studies (observational studies, device studies) have no phase.
Are results available for this study?
Yes. Results are posted in the registry (first posted 31 Mar 2014). A summary is in the For doctors view, and the full results are on ClinicalTrials.gov.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Time Duration of AHC Episodes (time frame: Week 7). The study lists 3 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT00931164, which also lists 43 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 31 Mar 2014.