New registry to monitor growth hormone treatment in kids with rare condition
NCT ID NCT05308927
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study is a registry that will follow up to 221 children with Noonan Syndrome who are already taking or starting Norditropin® for short stature. Researchers will collect information on growth, side effects, and quality of life over time. No new treatment is being tested—the goal is to learn more about how this approved medicine works in real-world settings.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 221 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Mar 2022
- Expected to finish
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Mar 2028
An estimate. End dates often move.
- Lead sponsor
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A company
The lead sponsor is a pharmaceutical, biotech, or medical-device company.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
The registry will include children treated with Norditropin® for short stature due to NS.
- Ages
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Children (under 18), adults (18 to 64) and older adults (65 and over)
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Patients with a clinical and/or genetic diagnosis of NS * Patients who are treated with Norditropin® (already treated or initiating) and who are followed in a participating center * The decision to initiate treatment with commercially available Norditropin® has been made by the patient/parents/Legally Acceptable Representative (LAR) and the treating physician before and independently from the decision to include the patient in this study Exclusion Criteria: * Patients/Parents/LAR opposed to the collection and processing of their children's medical data * Mental incapacity, unwillingness or language barriers precluding adequate understanding or cooperation
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Genom att skicka in godkänner du våra Användarvillkor
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
3 sites. The list below names each one and where it is.
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The official record
The full official record for this study. This one lists no contact details, but it is the first place any would appear.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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Ap-Hp-Hopital de Bicetre-2
Le Kremlin-Bicêtre, 94275, France
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Centre Hospitalier Universitaire D'Angers-2
Angers, 49033, France
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Hopital Des Enfants-2
Toulouse, 31059, France
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Would families trade daily growth hormone shots for weekly ones?
- Noonan syndrome study aims to uncover hidden heart risks
- Noonan syndrome research: scientists launch sample collection to unlock disease secrets
- New drug aims to boost growth in kids with noonan syndrome
- New program aims to ease burden on families of kids with rare diseases
- New study tests online therapy to ease stress for parents of kids with RASopathies