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Angelman Syndrome Natural History Study

Join our Angelman Syndrome study to help advance research.

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Phase N/A

Angelman Syndrome is a rare genetic disorder that affects the nervous system. People with this syndrome may have trouble with movement and speech, and often have a happy demeanor. This study aims to learn more about how Angelman Syndrome affects children and adults over time. Researchers will gather information from both doctors and parents to help understand the condition better and improve future care.

To join this study, participants must have a confirmed diagnosis of Angelman Syndrome. If someone has another condition that affects their brain development, they cannot join. The study will follow participants over a long period to see how the condition changes and to set standards for future research.

  • Duration: This study is long-term, meaning it will take place over several years.
  • Visits: Participants will need to come in for regular check-ups.
  • Benefits: While there may be no direct benefits to participants, the information gathered will help improve future treatments and care for Angelman Syndrome.
Study details
    Angelman Syndrome

NCT04507997

Boston Children's Hospital

13 December 2024

Step 1 Get in touch with the nearest study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer  to help accelerate the development of new treatments and to get notified about similar trials.

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What is a clinical trial?

A clinical trial is a study designed to test specific interventions or treatments' effectiveness and safety, paving the way for new, innovative healthcare solutions.

Why should I take part in a clinical trial?

Participating in a clinical trial provides early access to potentially effective treatments and directly contributes to the healthcare advancements that benefit us all.

How long does a clinical trial take place?

The duration of clinical trials varies. Some trials last weeks, some years, depending on the phase and intention of the trial.

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Compensation varies per trial. Some offer payment or reimbursement for time and travel, while others may not.

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Clinical trials follow strict ethical guidelines and protocols to safeguard participants' health. They are closely monitored and safety reviewed regularly.
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