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Aktiv, aber nicht rekrutierendPHASE2INTERVENTIONELL

A Safety and Efficacy Study of GTX-102 in Subjects With Deletion- or Nondeletion-type Angelman Syndrome (AS)

This research study is investigating a new medication called GTX-102 for people with Angelman Syndrome. The main purpose is to find out if GTX-102 is safe to use and if it can help improve the symptoms of Angelman Syndrome. The study includes individuals with different genetic types of Angelman Syndrome and across various age groups, from young children to adults. Participants will generally go through screening, a period of receiving the treatment (or no treatment for some), and then a maintenance phase. For some parts of the study, everyone will receive GTX-102, but in one part, people will be randomly assigned to either receive the treatment or go without treatment for a period. Everyone will have the option to continue with the treatment in a longer-term study afterwards.

Auf einen Blick

Status
Aktiv, aber nicht rekrutierend
Phase
PHASE2
Sponsor
Ultragenyx Pharmaceutical Inc
Einschreibeziel
60
Starten
13. Okt 2025
Geschätzte Fertigstellung
01 Jan 2030

Worum geht es in dieser Studie?

Angelman Syndrome is a rare genetic condition that affects the nervous system, leading to developmental delays, problems with speech and balance, and often seizures. Currently, there isn't a cure, and treatments focus on managing the symptoms. This study is exploring a new potential treatment, GTX-102, to see if it can make a difference for people with this condition.

Researchers want to understand if GTX-102 is safe for people of various ages and genetic types of Angelman Syndrome. They also want to find out if it can help improve some of the changes caused by the syndrome. The study is divided into several smaller parts, but they all follow a similar pattern: first, a check to see if someone can join (screening), then a period where they receive the study treatment (or don't, for some), and finally a longer-term period where the effects are monitored.

Some participants will openly receive the treatment, meaning both they and the study team know they are getting GTX-102. In one part of the study, participants will be randomly assigned to either get GTX-102 or be in a 'no treatment' group for a while. This helps the researchers compare the effects fairly. After completing the main study, all participants will have the chance to continue receiving the treatment in a long-term follow-up study.

Wichtige Erkenntnisse

  • Tests a new medicine (GTX-102) for Angelman Syndrome.
  • Aims to check safety and if it helps symptoms across different ages and genetic types.
  • Involves regular clinic visits and procedures like spinal taps and MRI scans.
  • Some participants might be in a 'no treatment' group at first.
  • Option to continue treatment in a long-term study afterwards.
  • Die Teilnahme ist freiwillig, und Sie können jederzeit zurücktreten.

Wer könnte berechtigt sein?

To join this study, a parent or legal guardian must give their permission. The study is open to both boys and girls with a confirmed diagnosis of Angelman Syndrome. Depending on the specific part of the study, certain genetic types and age ranges are included. Generally, participants need to be at least 1 year old and under 65 years old, and weigh at least 8 kg (about 1 stone 3 pounds).

There are also some medical checks needed, like blood tests, to make sure it's safe to take part. You also need to be able to come to clinic visits and follow the study plan, which includes certain procedures like spinal taps (lumbar punctures) and MRI scans. If you're a female who could have children and are sexually active, you'll need to use reliable contraception. Males will also need to use contraception or avoid sex during and after the study for a certain period.

You might not be able to join if you've recently changed other medicines or diets for Angelman Syndrome, if you have a condition that makes a spinal tap risky, or if you're taking certain other medications at the same time. These rules are in place to help keep everyone safe and make sure the study results are clear.

Könnte diese Studie für Sie geeignet sein?

Beantworten Sie diese kurzen Fragen, um zu sehen, ob Sie möglicherweise berechtigt sind. Dies ist nur ein Leitfaden – das Forschungsteam trifft die endgültige Entscheidung.

  1. Is a parent or legal guardian willing to give permission?
  2. Do you have a confirmed diagnosis of Angelman Syndrome?
  3. Are you between 1 and 64 years old, and weigh at least 8 kg?
  4. Can you attend regular hospital visits and have blood tests and spinal taps?
  5. Have you avoided changing other Angelman Syndrome medicines/diets recently?
  6. Are you able or willing to use contraception if sexually active and able to have children?
Beantworten Sie jede Frage, um Ihr Ergebnis zu sehen.

Was beinhaltet die Teilnahme?

If you decide to take part, you'll first have a screening visit to check if you're suitable. This will involve medical examinations, blood tests, and other assessments. If you qualify, you'll then enter either a 'loading' period followed by a 'maintenance' period. During these times, you'll receive the study medication (GTX-102) if you're in a treatment group. This will involve regular clinic visits to monitor your health, give the medication, and perform tests like further blood work, spinal taps, and MRI scans to see how you're responding and to check for any side effects. The medication is given via a spinal tap.

For participants in the 'no treatment' group (only in Subprotocol D), you'll have similar visits and tests but won't receive the study drug during that period. Eventually, you'll also have the option to receive GTX-102. The total duration of participation in the main study varies depending on which subprotocol you are in, but after completing it, you'll have the opportunity to continue receiving GTX-102 in a long-term extension study.

Potenzielle Risiken und Vorteile

Participating in a study like this might offer the potential benefit of trying a new treatment that could improve symptoms of Angelman Syndrome, which currently has limited options. You'll also receive close medical attention and monitoring throughout the study. However, there are potential risks. GTX-102 is an experimental drug, so unwanted side effects are possible. Procedures like spinal taps and MRI scans also carry their own small risks, such as headaches or discomfort. It's important to understand that there's no guarantee the treatment will work for you, and it might not improve your condition. You are free to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (21)

  • Cedars Sinai Medical Center
    Verifizierte Postleitzahl
    Los Angeles, Vereinigte Staaten
  • Rush Universitätsklinikum
    Verifizierte Postleitzahl
    Chicago, Vereinigte Staaten
  • Kennedy Kreiger Institute
    Verifizierte Postleitzahl
    Baltimore, Vereinigte Staaten
  • Clinical Trial Site
    Verifizierte Postleitzahl
    Kansas City, Vereinigte Staaten
  • Rare Disease Research
    Verifizierte Postleitzahl
    Hillsborough, United States
  • Akron Children's Hospital
    Verifizierte Postleitzahl
    Akron, United States
  • UT Health Austin
    Verifizierte Postleitzahl
    Austin, Vereinigte Staaten
  • Carum Research Inc.
    Verifizierte Postleitzahl
    Dallas, Vereinigte Staaten
  • Hospital Universitario Austral
    Verifizierte Postleitzahl
    Pilar, Argentinien
  • Hospital de Crianças César Pernetta e Hospital Pequeno Príncipe
    Verifizierte Postleitzahl
    Curitiba, Brazil
  • Casa dos Raros
    Verifizierte Postleitzahl
    Santa Cecília, Brazil
  • Hopital de la Timone
    Verifizierte Postleitzahl
    Marseille, Frankreich

Häufige Fragen

What is Angelman Syndrome?

Angelman Syndrome is a rare genetic condition affecting development, speech, balance, and often causing seizures. It's not contagious.

What is GTX-102?

GTX-102 is a new medicine being tested in this study to see if it can help people with Angelman Syndrome. It's not yet approved for general use.

Will I definitely get the new treatment?

In most parts of the study, you will receive GTX-102. However, in one specific part, some participants will be randomly chosen to receive no treatment for a period before getting the option to try GTX-102.

What are spinal taps (lumbar punctures)?

A spinal tap is a procedure where a small needle is used to take fluid from your lower back, or to give medicine directly into the fluid around the brain and spinal cord. It's done by a doctor.

Wie lange wird die Studie dauern?

The main study's length varies depending on which group you're in. After the main study, there's an option to continue with the treatment in a longer-term study.

Wie Sie mehr erfahren können

Sprechen Sie immer mit Ihrem Hausarzt oder Spezialisten, bevor Sie sich entscheiden, an einer Studie teilzunehmen.

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