Hunter SyndromeNCT05795361
Post-trial Access Program of Idursulfase-IT Along With Elaprase in Children With Hunter Syndrome
A study testing Idursulfase-IT in people with Hunter Syndrome, run by Takeda at 22 sites in 5 countries.
Trial summary
As the HGT-HIT-046 (NCT01506141) and SHP609-302 (NCT02412787) studies are completed and closed, this post-trial access (PTA) program provides TAK-609 to participants in these studies for whom the benefit:risk ratio of continued treatment with idursulfase-IT remains positive. Read more about this study
- Who is it for?
- Any age, men only
- Conditions the study is for
- Hunter Syndrome
- What is being tested?
- Idursulfase-IT
- Type of treatment
- Injection or infusion
- How many people
- Not given
- Where
- 22 sitesin 5 countries
- Study dates
- Start not givento not given
- Phase
- Expanded access
- Are there results?
- None posted in the registry
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 Any age
- Men only
- No healthy volunteers
- Child, Adult, Older adult
Who may be able to join
- Participants will have completed the treatment period of the HGT-HIT-046 (NCT01506141) or SHP609-302 (NCT02412787) study prior to the first dose on this program.
- Participant and/or a parent(s)/legal guardian is informed of the nature of this compassionate post-trial access program and can provide written informed consent for themselves or the child to participate (with assent from the child when appropriate prior to treatment).
Who cannot join
- Participant has a condition that in the opinion of the treating physician may compromise their safety.
- Participant has a known hypersensitivity to idursulfase-IT or its components.
Trial locations and contacts
22 sites in 5 countries.
22 sites in 5 countries
United States17 sites
- Available
The University of North Carolina
Chapel Hill, North Carolina, 27514
Site Contact, muenzer@med.unc.edu
Joesph Muenzer
- Available
Ann and Robert H Lurie Childrens Hospital of Chicago
Chicago, Illinois, 60611
Site Contact, bburton@luriechildrens.org
Barbara Burton
- Available
The Cleveland Clinic Foundation
Cleveland, Ohio, 44195
Site Contact, hannar2@ccf.org
Rabi Hanna
- Available
Joseph M. Sanzari Children's Hospital
Hackensack, New Jersey, 07601
Site Contact, helio.pedro@hmhn.org
Helio Pedro
- Available
Jackson Memorial Hospital University of Miami
Miami, Florida, 33101
Site Contact, wthorson@med.miami.edu
Willa Thorson
- Available
Vanderbilt Children's Hospital
Nashville, Tennessee, 37232-7610
Site Contact, neena.agrawal@vumc.org
Neena Agrawal
- Available
NYU Langone Medical Center
New York, New York, 10017
Site Contact, devorah.segal@nyulangone.org
Devorah Segal
- Available
The Regents of the University of California
Oakland, California, 94609
Site Contact, paul.harmatz@ucsf.edu
Paul Harmatz
- Available
Board of Regents of the University of Nebraska
Omaha, Nebraska, 68198-5450
Site Contact, wrizzo@unmc.edu
William Rizzo
- Available
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104
Site Contact, ficicioglu@chop.edu
Can Ficicioglu
- Available
Phoenix Childrens Hospital
Phoenix, Arizona, 85015
Site Contact, jknoll@phoenixchildrens.com
Jasmine Knoll
- Available
UPMC Childrens Hospital of Pittsburgh
Pittsburgh, Pennsylvania, 15224
Site Contact, damara.ortiz@chp.edu
Damara Ortiz
- Available
Randall Children's Hospital at Legacy Emanuel
Portland, Oregon, 97227
Site Contact, ganadiot@lhs.org
George Anadiotis
- Available
Division of Medical Genetics, University of Utah
Salt Lake City, Utah, 84112
Site Contact, dave.viskochil@hsc.utah.edu
David Viskochil
- Available
Seattle Children's Hospital - PIN
Seattle, Washington, 98105
Site Contact, angela.sun@seattlechildrens.org
Emily Shelkowitz
- Available
Washington University
Washington, Missouri, 63130
Site Contact, grangedk@wustl.edu
Dorothy Grange
- Available
The Nemours Foundation
Wilmington, Delaware, 19803
Site Contact, jeffrey.campbell@nemours.org
Jeffery Campbell
Mexico2 sites
- Available
Instituto Nacional de Pediatria
Coyoacán, Mexico City, 4530
Site Contact, maatilderuizg@gmail.com
Matilde Ruiz-Garcia
- Available
H.C.U. de Valladolid
Valladolid, 47003
Site Contact, mcastrorey@saludcastillayleon.es
Margarita Castro Rey
Australia1 site
- Available
Queensland Childrens Hospital
South Brisbane, Queensland, QLD 4101
Site Contact, anita.inwood@health.qld.gov.au
Anita Inwood
Spain1 site
- Available
Hospital Universitario Reina Sofia
Córdoba, 14004
Site Contact, mercedes_gil_campos@yahoo.es
Mercedes Gil Campos
United Kingdom1 site
- Available
Royal Manchester Children's Hospital - PPDS
Manchester, M13 9WL
Site Contact, Simon.Jones@mft.nhs.uk
Simon Jones
About this study
Official title: Post-trial Access Program: Idursulfase-IT (HGT-2310) in Conjunction With Intravenous Elaprase® in Pediatric and Adult Patients With Hunter Syndrome and Cognitive Impairment
As the HGT-HIT-046 (NCT01506141) and SHP609-302 (NCT02412787) studies are completed and closed, this post-trial access (PTA) program provides TAK-609 to participants in these studies for whom the benefit:risk ratio of continued treatment with idursulfase-IT remains positive.
- Conditions
- Hunter Syndrome
- Being tested
- Idursulfase-IT
- Medical subject headings
- Mucopolysaccharidosis II
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Idursulfase-ITDrug
Also called HGT-2310, TAK-609
Participants will continue to receive the same dose of idursulfase-IT, once monthly, that was administered during the HGT-HIT-046 [NCT01506141] or SHP609-302 [NCT02412787] study [10mg or 30mg] along with intravenous (IV) infusions of standard-of-care therapy Elaprase via intrathecal drug delivery device (IDDD) or lumbar punctures.
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted3 Apr 2023
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Hunter SyndromeStudies of the same condition, open and under way.
- More trials run by TakedaThe 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
- Expanded access
Sponsor and investigators
- Lead sponsor
- Takeda
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
- Investigators
- Study Director, Study director, Takeda
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05795361
- Sponsor's protocol ID
- TAK-609-5005
- Status last verified
- Apr 2026
- First submitted
- 20 Mar 2023
- Last updated
- 13 Apr 2026
- Results posted
- No
Study at a glance
From the registry record, last updated by the sponsor on 13 Apr 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Post-trial Access Program: Idursulfase-IT (HGT-2310) in Conjunction With Intravenous Elaprase® in Pediatric and Adult Patients With Hunter Syndrome and Cognitive Impairment
- ClinicalTrials.gov ID
- NCT05795361
- Acronym / sponsor ID
- TAK-609-5005
- Conditions
- Hunter Syndrome
- Study type
- Expanded access
- Recruitment status
- Available
- Lead sponsor
- TakedaIndustry (pharma, biotech, devices)
- First posted
- 3 Apr 2023 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
As the HGT-HIT-046 (NCT01506141) and SHP609-302 (NCT02412787) studies are completed and closed, this post-trial access (PTA) program provides TAK-609 to participants in these studies for whom the benefit:risk ratio of continued treatment with idursulfase-IT remains positive.
Study design
Who may qualify
- Sex
- Male only
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (2 listed)
- Participants will have completed the treatment period of the HGT-HIT-046 (NCT01506141) or SHP609-302 (NCT02412787) study prior to the first dose on this program.
- Participant and/or a parent(s)/legal guardian is informed of the nature of this compassionate post-trial access program and can provide written informed consent for themselves or the child to participate (with assent from the child when appropriate prior to treatment).
Key exclusion criteria (2 listed)
- Participant has a condition that in the opinion of the treating physician may compromise their safety.
- Participant has a known hypersensitivity to idursulfase-IT or its components.
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 |
|---|---|---|
| Idursulfase-ITAlso: HGT-2310, TAK-609Participants will continue to receive the same dose of idursulfase-IT, once monthly, that was administered during the HGT-HIT-046 [NCT01506141] or SHP609-302 [NCT02412787] study [10mg or 30mg] along with intravenous (IV) infusions of standard-of-care therapy Elaprase via intrathecal drug delivery device (IDDD) or lumbar punctures. | Drug | – |
Primary outcome
Not reported in the source record.
Results and safety
Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 13 Apr 2026.
- To obtain more information on the study, click here/on this linkLink provided by the sponsor.
- Click here to ask Takeda's chatbot for comprehensive and easy-to-understand information about clinical trials - even across products and indications - in your local language.Link provided by the sponsor.
Related trials for Hunter Syndrome
Active, not recruitingPhase 2
MT2013-31: Allo HCT for Metabolic Disorders and Severe Osteopetrosis
Mucopolysaccharidosis Disorders, Hurler Syndrome
Enrolling by invitationPhase 2/3
An Extension Study of the Long-Term Safety, Tolerability, and Efficacy of Tividenofusp Alfa (DNL310) in Participants With Mucopolysaccharidosis Type II (MPS II) From Study DNLI-E-0002 or Study DNLI-E-0007
Mucopolysaccharidosis II
Active, not recruitingPhase 3
A Phase III Study of JR-141 in Patients With Mucopolysaccharidosis II (STARLIGHT)
Mucopolysaccharidosis II
Active, not recruitingPhase 2/3
A Multi-cohort Study of Safety, Efficacy, PK and PD of GNR-055 in Patients With Mucopolysaccharidosis Type II
Mucopolysaccharidosis Type II, Metabolic Diseases
Active, not recruitingPhase 2/3
A Study to Determine the Efficacy and Safety of Tividenofusp Alfa (DNL310) vs Idursulfase in Pediatric and Young Adult Participants With Neuronopathic (nMPS II) or Non-Neuronopathic Mucopolysaccharidosis Type II (nnMPS II)
Mucopolysaccharidosis II
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.
Study Director study director
Takeda
22 sites in 5 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Idursulfase-IT in people with Hunter Syndrome, run by Takeda at 22 sites in 5 countries.
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 2 inclusion and 2 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: status not confirmed, as of the sponsor's last update on 13 Apr 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 22 sites in United States, Mexico, Australia, Spain, United Kingdom. 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.
Are results available for this study?
Results are not available in the source record.
How can a doctor refer a patient or contact the research team?
Contact Takeda Contact (+1877-825-3327, medinfoUS@takeda.com), or a site near the patient. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
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 13 Apr 2026.