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Mucopolysaccharidosis IPhase 4NCT00418821

A Study of the Effect of Aldurazyme® (Laronidase) Treatment on Lactation in Female Patients With Mucopolysaccharidosis I (MPS I) and Their Breastfed Infants

A Phase 4 study testing Laronidase in people with Mucopolysaccharidosis I and Hurler's Syndrome, run by Genzyme, a Sanofi Company at 1 site in Italy.

Terminated

Stopped early. The study ended before it was planned to and will not resume.

Official record
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Trial summary

The purpose of this study is to determine if laronidase is present in the breast milk of post-partum women receiving Aldurazyme® (laronidase) and the effects of Aldurazyme (laronidase) on the growth, development, and immunologic response of their breastfed infants. Read more about this study

Who is it for?
Any age, women only
What is being tested?
Laronidase
Type of treatment
Injection or infusion
Could I receive a placebo?
No, everyone receives an active treatment
How many people
2 participants
Where
1 siteItaly
Study dates
22 Oct 2010to 21 Dec 2022
Phase
Phase 4
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 Any age
  • Women only
  • No healthy volunteers
  • Child, Adult, Older adult

Who may be able to join

  • The patient must have a documented laronidase deficiency with a fibroblast, plasma, serum, leukocyte, or dried blood spot laronidase enzyme activity assay.
  • Be pregnant, planning to breastfeed post-partum, and receiving Aldurazyme (laronidase) therapy while breastfeeding.
  • Provide signed, written informed consent prior to any protocol-related procedures. Consent of a legally authorized guardian(s) is (are) required for mothers younger than 18 years of age. If a mother is under 18 years old and can understand the consent, written informed consent is required from both the mother and the authorized guardian(s).
  • Provide signed, written informed consent for their infants to participate as study patients. If a mother is younger than 18 years of age, consent for mother and infant will be obtained from the legal guardian.

Who cannot join

  • Have a medical condition, serious intercurrent illness, or other extenuating circumstance that may interfere with study compliance, including all prescribed evaluations and follow-up activities.
  • Have received an investigational drug within 30 days prior to study enrollment.

Trial locations and contacts

1 site in 1 country.

Italy1 site
  • Dipartimento di Scienze Pediatriche Medico - Chirurgiche e Neuro Scienze dello Suiluppo

    Rome

Other trials in Italy

About this study

Official title: A Multicenter, Multinational, Open-Label Study of the Effects of Aldurazyme® (Laronidase) Treatment on Lactation in Women With Mucopolysaccharidosis I (MPS I) and Their Breastfed Infants

The purpose of this study is to determine if laronidase is present in the breast milk of post-partum women receiving Aldurazyme® (laronidase) and the effects of Aldurazyme (laronidase) on the growth, development, and immunologic response of their breastfed infants.

Read the detailed description

Recruitment is not limited to the facility listed; facilities not yet active may be added upon identification of a patient.

Being tested
Laronidase
Medical subject headings
Mucopolysaccharidosis I

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • LaronidaseBiological

    Also called Aldurazyme, Recombinant human alpha L iduronidase

    dose of 0.58mg/kg body weight intravenously (IV) every week

Study groups in NCT00418821
Study groupRoleWhat they receive
LaronidaseExperimentalMothers treated with laronidase who intended to breastfeed their infants while receiving laronidase and their infants who were breastfeed while the mothers were receiving laronidase.
Receives: Biological: Laronidase

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Number of Lactating Women With Serum IgG Antibodies to Laronidase

    Measured: Up to 18 months

  2. Amount of IgG Antibody Titers to Laronidase in Lactating Women

    Measured: Baseline and Week 12

  3. Number of Women Who Breastfed

    Measured: Up to 18 months

  4. Number of Women Who Were Successful at Breastfeeding

    Measured: Up to 18 months

  5. Number of Women Whose Breast Milk Contains Laronidase

    Measured: Up to 18 months

  6. Amount of Laronidase in the Breast Milk of Lactating Mothers With Mucopolysaccharidosis I (MPS I) Disease

    Measured: Up to 18 months

  7. Number of Women With Abnormal Urine Glycosaminoglycans (uGAG) Levels

    Measured: Up to 18 months

  8. Amount of uGAG in the Urine of Women

    Urine samples were collected at specified intervals to measure uGAG in the urine of women. Reference range of uGAG between 2.64 - 37.65 was considered as normal. mg/g creatinine = milligram per gram of creatinine.

    Measured: Baseline and Week 12

  9. Number of Participants With Medical History of the Mother: Pre-Existing Conditions

    Measured: Baseline

  10. Physical Examination Findings of the Mother

    Physical examination was performed at specified intervals. Physical examination included the following physical observations: general appearance, skin, head, ears, eyes, nose, and throat, lymph nodes, abdomen, extremities/joints, neurological, mental status, and the following, if appropriate, breasts, external genitalia, pelvic, and rectal.

    Measured: Up to 18 months

  11. Temperature of the Mother

    Measured: Baseline and Week 12

  12. Heart Rate of the Mother

    Measured: Baseline and Week 12

  13. Respiratory Rate of the Mother

    Measured: Baseline and Week 12

  14. Blood Pressure of the Mother

    Systolic blood pressure (SBP) and diastolic blood pressure (DBP) were measured at specified timepoints.

    Measured: Baseline and Week 12

  15. Weight of the Mother

    Measured: Baseline and Week 12

  16. Height of the Mother

    Measured: Baseline

  17. Number of Infants With Abnormal uGAG Levels

    Measured: Up to 72 weeks

  18. Amount of uGAG in the Urine of Infants

    Urine samples were collected at specified intervals to measure uGAG in the urine of infant. Reference range of uGAG between 30 - 300 was considered as normal.

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, Week 60, and Week 72

  19. Number of Participants With Medical History of the Infant:Pre-Existing Conditions

    Measured: Baseline

  20. Number of Infants With Abnormal Physical Finding

    Physical examination included the following physical observations: general appearance, skin, lymph nodes, heart, lungs, abdomen, extremities/joints, neurological, mental status, breasts, external genitalia, pelvic, rectal, and Heent.

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, and Week 72

  21. Heart Rate of the Infant

    Heart rate was measured at specified timepoints.

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, and Week 72

  22. Respiratory Rate of the Infant

    Respiratory rate was measured at specified timepoints.

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, and Week 72

  23. Blood Pressure of the Infant

    Systolic blood pressure (SBP) and diastolic blood pressure (DBP) were measured at specified timepoints.

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, and Week 72

  24. Weight of the Infant

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, and Week 72

  25. Height of the Infant

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, and Week 72

  26. Temperature of the Infant

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, and Week 72

  27. Head Circumference of the Infant

    Measured: Baseline, Week 12, Week 24, Week 36, Week 48, and Week 72

  28. Number of Participants With Normal Overall Assessment Measured Using Denver II Developmental Screening Scores

    Infant development was assessed with the Denver II Developmental Screening Test. It consisted of 5 areas/subscore i.e., test behavior, personal-social, fine motor, language, and gross motor. The number of participants with normal overall assessment measured using Denver II Developmental Screening Scores have been reported by visit.

    Measured: Week 12, Week 24, Week 36, Week 48, and Week 72

  29. Number of Infants With IgM and IgG Antibodies to Laronidase Present at Any Time Point

    Measured: Baseline, Week 12, Week 24, Week 36, and Week 72

  30. Time to Development of IgM and IgG Antibodies to Laronidase

    Measured: up to Week 72

  31. Amount of IgG and IgM Antibody Titers to Laronidase

    Measured: Baseline, Week 12, Week 24, Week 36, and Week 72

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted5 Jan 2007 (estimated)
  2. Study start22 Oct 2010
  3. Primary completion21 Dec 2022
  4. Study completion21 Dec 2022

Why it stopped: Study was conducted to fulfill a post marketing commitment (PMC). FDA acknowledged closure of PMC.

Resources

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 4
Primary purpose
Treatment
Allocation
Not applicable
Intervention model
Single group
Masking
None (open label)
Enrolment
2 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT00418821
Sponsor's protocol ID
OBS12874
Other IDs
2007-007003-33, ALID01803
Status last verified
Feb 2024
First submitted
3 Jan 2007
Last updated
20 Feb 2024
Data monitoring committee
No
Individual data sharing
Yes: Qualified researchers may request access to patient level data and related study documents including the clinical study report, study protocol with any amendments, blank case report form, statistical analysis plan, and dataset specifications. Patient level data will be anonymized and study documents will be redacted to protect the privacy of trial participants. Further details on Sanofi's data sharing criteria, eligible studies, and process for requesting access can be found at: https://vivli.org

Publications

  • Castorina M, Antuzzi D, Richards SM, Cox GF, Xue Y. Successful pregnancy and breastfeeding in a woman with mucopolysaccharidosis type I while receiving laronidase enzyme replacement. therapy. Clin Exp Obstet Gynecol. 2015;42(1):108-13.

    PubMed 25864295

Questions about this trial

What is this clinical trial studying?

A Phase 4 study testing Laronidase in people with Mucopolysaccharidosis I and Hurler's Syndrome, run by Genzyme, a Sanofi Company at 1 site in Italy.

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 4 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: stopped early, as of the sponsor's last update on 20 Feb 2024. 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 Italy. 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 phase mean?

Phase 4 studies take place after a treatment is approved, to learn more about its long-term benefits and risks in everyday use.

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 20 Feb 2024). 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?

Number of Lactating Women With Serum IgG Antibodies to Laronidase (time frame: Up to 18 months). The study lists 31 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 NCT00418821, which also lists 1 linked publication.

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 20 Feb 2024.

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