A Phase 1/2 interventional study of rAAV9-CMV-hNAGLUop in Sanfilippo Syndrome (MPS III), sponsored by NeuroGT. Not yet recruiting at 1 site in United States. Open to participants aged 6 Months and older. Per ClinicalTrials.gov, last updated 2026-09-14.
Sponsored by NeuroGT · Phase 1/2, Interventional, and Treatment
The goal of this clinical trial is to learn if one infusion of rAAV9-CMV-hNAGLUop can treat patients with Sanfilippo syndrome (MPS III) 6 months or older. The main questions it aims to answer are:
Participants will be asked to come to Washington University St. Louis and stay in the hospital overnight following the infusion. Partcipant and caregiver(s) will be asked to stay near the hospital for the first month and come back periodically for clinic visits.
This is a dose escalation study where one infusion of rAAV9-CMV-hNAGLUop will be administered to patients with Sanfilippo Disease (MPS III).
Patients will go through an Informed Consent process and eligibility assessed by reviewing patient medical history and laboratory values.
Eligible patients will receive the infusion of rAAV9-CMV-hNAGLUop followed by an inpatient stay in the hospital for at least one night. Over the next 30 days, participants and their caregiver(s) will stay in a home near the hospital to facilitate visits back to the hospital. Participants will have laboratory samples collected at a lab near their home at days 45 and 75. Participants will come back to Washington University St. Louis at Day 60, Day 90, Day 120, Day 180, Month 12, Month 18 and Month 12 to have laboratory tests and other assessments, including ECG, motor skills assessments, gait test, questionnaires, and evaluation by the PI completed.
58 studies on the registry are indexed under Mucopolysaccharidosis III; 16 are open to participants now.
This study's planned enrollment of 9 is below the median of 12 across 33 interventional studies indexed under Mucopolysaccharidosis III.
Browse Mucopolysaccharidosis III studies →This is the only study on the registry with NeuroGT as lead sponsor.
Counted across the registry records on this site, refreshed daily.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Confirmed diagnosis of MPS IIIB based upon meeting the following conditions:
Exclusion Criteria:
abnormal hematology within 1 month of infusion (complete blood count with differential), blood chemistry (including (AST), alanine aminotransferase (ALT), alkaline phosphatase (ALP), gamma-glutamyl transpeptidase (GGT), , creatinine, and CRP), coagulability labs (international normalized ration (), prothrombin time (PT), activated partial thromboplastin time (aPTT). An abnormal laboratory value will be based on clinical laboratory reference ranges and Investigator's clinical judgment and will be deemed clinically significant if either of the following are met at baseline:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
A drug or device being studied in a clinical trial.
It may be new, or already approved and being studied for another use, dose or form. Criteria often leave out people who took part in another study of one within a recent period, commonly 30 days or five half-lives.
The human immunodeficiency virus, which weakens the immune system.
Many studies now accept people whose HIV is controlled on treatment, judged by the viral load and the CD4 count. Check the limits this study sets.
Judged by the study doctor to matter for your health or for the study. It is a doctor’s decision, so ask the study team if you are unsure whether something counts.
Two enzymes measured in a routine blood test of the liver. Higher levels can mean the liver is under strain or damaged. SGPT and SGOT are older names for ALT and AST.
Criteria usually give a limit as a multiple of the upper limit of normal (ULN), often higher when cancer has spread to the liver.
A yellow substance made when red blood cells are broken down, which the liver clears. A high level can mean a problem with the liver or the bile ducts.
Criteria often allow more for people with Gilbert’s syndrome, a harmless inherited condition that raises bilirubin.
Blood tests of how long blood takes to clot. The INR is the prothrombin time (PT) put on a common scale; about 1 is usual for someone not taking a blood thinner.
Criteria often make an exception for people on a blood thinner such as warfarin, whose INR is raised on purpose.
Investigational drug or device
A drug or device being studied in a clinical trial.
It may be new, or already approved and being studied for another use, dose or form. Criteria often leave out people who took part in another study of one within a recent period, commonly 30 days or five half-lives.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
HIV
The human immunodeficiency virus, which weakens the immune system.
Many studies now accept people whose HIV is controlled on treatment, judged by the viral load and the CD4 count. Check the limits this study sets.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Clinically significant
Judged by the study doctor to matter for your health or for the study. It is a doctor’s decision, so ask the study team if you are unsure whether something counts.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
ALT and AST (liver enzymes)
Two enzymes measured in a routine blood test of the liver. Higher levels can mean the liver is under strain or damaged. SGPT and SGOT are older names for ALT and AST.
Criteria usually give a limit as a multiple of the upper limit of normal (ULN), often higher when cancer has spread to the liver.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Bilirubin
A yellow substance made when red blood cells are broken down, which the liver clears. A high level can mean a problem with the liver or the bile ducts.
Criteria often allow more for people with Gilbert’s syndrome, a harmless inherited condition that raises bilirubin.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
INR, PT and aPTT (clotting tests)
Blood tests of how long blood takes to clot. The INR is the prothrombin time (PT) put on a common scale; about 1 is usual for someone not taking a blood thinner.
Criteria often make an exception for people on a blood thinner such as warfarin, whose INR is raised on purpose.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
rAAV9-CMV-hNAGLUop Low Dose
Biological: rAAV9-CMV-hNAGLUop
rAAV9-CMV-hNAGLUop High Dose
Biological: rAAV9-CMV-hNAGLUop
Systemic rAAV9-CMV-hNAGLUop gene delivery given once
Assessment of Safety
Incidence of unacceptable toxicity defined as the occurrence of two or more unanticipated Grade III or higher treatment-related toxicities
Time frame: 24 months
Biopotency Outcome Measures
Increase in enzyme activity levels above baseline
Time frame: 24 months
Exploratory Efficacy Outcome Measures
• Change in daily functioning
Time frame: 24 months
Plan to share: Undecided — Corporate decision on whether to share information is undecided based on stage of company
No publications or documents are linked to this record.
This study is not yet recruiting, as verified in Sep 2026. You cannot join it, but the record below documents what was studied.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.