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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.

במבט חטוף

סטטוס
פעיל אך לא מגייס
שלב
שלב 2
נותן חסות
Ultragenyx Pharmaceutical Inc
יעד הרשמה
60
התחל
13 אוקטובר 2025
השלמה משוערת
01 Jan 2030

על מה המחקר הזה?

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.

נקודות עיקריות

  • 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.
  • ההשתתפות היא בהתנדבות, ואתה יכול לפרוש בכל עת.

מי עשוי להיות זכאי?

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.

האם מחקר זה יכול להתאים לך?

ענה על השאלות המהירות הללו כדי לבדוק אם אתה עשוי להיות זכאי. זהו מדריך בלבד — צוות המחקר מקבל את ההחלטה הסופית.

  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?
ענה על כל שאלה כדי לראות את התוצאה שלך.

מה כרוך בהשתתפות?

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.

סיכונים ותועלות פוטנציאליים

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.

מיקומים (21)

  • מרכז רפואי סידרס סיני
    מיקוד מאומת
    לוס אנג'לס, ארצות הברית
  • Rush University Medical Center
    מיקוד מאומת
    שיקגו, ארצות הברית
  • Kennedy Kreiger Institute
    מיקוד מאומת
    בולטימור, ארצות הברית
  • Clinical Trial Site
    מיקוד מאומת
    קנזס סיטי, ארצות הברית
  • מחקר מחלות נדירות
    מיקוד מאומת
    Hillsborough, United States
  • Akron Children's Hospital
    מיקוד מאומת
    Akron, United States
  • UT Health Austin
    מיקוד מאומת
    Austin, United States
  • Carum Research Inc.
    מיקוד מאומת
    דאלאס, ארצות הברית
  • Hospital Universitario Austral
    מיקוד מאומת
    Pilar, Argentina
  • Hospital de Crianças César Pernetta e Hospital Pequeno Príncipe
    מיקוד מאומת
    קוריטיבה, ברזיל
  • Casa dos Raros
    מיקוד מאומת
    Santa Cecília, Brazil
  • Hopital de la Timone
    מיקוד מאומת
    מרסיי, צרפת

שאלות נפוצות

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.

האם אני בהחלט אקבל את הטיפול החדש?

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.

כמה זמן יימשך המחקר?

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.

כיצד לגלות עוד

תמיד התייעץ עם רופא המשפחה או המומחה שלך לפני שתחליט להשתתף במחקר.

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