Research Studies and Clinical Trials Search
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Angelman Syndrome: Clinical Needs Survey
This study is for children/adults : • Diagnosed with Angelman Syndrome • Who are seen or will be seen at the Angelman Syndrome Clinic at Children's Mercy • Previously enrolled in the Linking Angelman and Dup15q Data for Expanded Research (LADDER) database or who would like...
This study is for children/adults : • Diagnosed with Angelman Syndrome • Who are seen or will be seen at the Angelman Syndrome Clinic at Children's Mercy • Previously enrolled in the Linking Angelman and Dup15q Data for Expanded Research (LADDER) database or who would like to join The goal of the study is to better understand Angelman and Dup15q syndromes. The Clinical Needs Survey will be used as the intake form for the clinic but will be stored in the LADDER database. The Angelman Syndrome Clinic is partnering with LADDER that will allow information about individuals seen at the clinic to be housed in a centralized database. The information held in LADDER is private and no information that could identify a patient or their family is shared with anyone outside the LADDER team. The goal is that information from these surveys will help researchers to create therapies and advance clinical trials more quickly and easily.
Dystonia and Cerebral Palsy: A study of a medicine called Trihexyphenidyl
This study is being done for children: • Ages between 5-17 years • Diagnosed with Dystonia and Cerebral Palsy • Parents/Guardians may participate in this research study...
This study is being done for children: • Ages between 5-17 years • Diagnosed with Dystonia and Cerebral Palsy • Parents/Guardians may participate in this research study This research study is being done to learn how a child's body breaks down and responds to the medicine Trihexyphenidyl, the sides effects of this medicine and how well it works.
Dystonia: A study using MRI images to potentially predict dystonia in children who experience low oxygen levels and brain injury at birth
There are two groups for this research study: Group 1 • Infants less than 30 days old...
There are two groups for this research study: Group 1 • Infants less than 30 days old • Have a diagnosis of Hypoxic-Ischemic Encephalopathy • Are receiving cooling therapy (hypothermia) • Already having a brain scan (MRI) as part of normal medical care Group 2 • Children who are 18 months - 7 years • Have a diagnosis of Dystonia • Already having a brain scan (MRI) as part of normal medical care The purpose of this research study is to gain information that will be used to help predict which children with low oxygen levels and brain injury at birth may go on to develop dystonia. This could allow for earlier treatments for at-risk children that could help improve their long-term development. This research study will add specialized Magnetic Resonance Imaging (MRI) images to the clinical MRI that babies are already receiving to get more information on their brain networks.
Episodic migraine: A study on erenumab treatment in children and adolescent
This study is for children/teens: • 12-17 years old • Who have up to 14 headaches in a month (with at least 4 being classified as a migraine)...
This study is for children/teens: • 12-17 years old • Who have up to 14 headaches in a month (with at least 4 being classified as a migraine) The purpose of the OASIS PEDIATRIC (EM) study is to evaluate the safety and effectiveness of a study medicine called erenumab to reduce the frequency of episodic migraine headaches. In this study, erenumab is being compared to a placebo, which allows researchers to evaluate the effects of the study medicine. Participants have to be willing to have two injections under the skin once a month, and follow all study instructions. Study participants will have approximately 8 monthly visits to the clinic, and if interested in the optional extension phase, there will be an additional 10 visits. The visits take about 2-3 hours.
Tuberous Sclerosis Complex (TSC): A study of a drug called Ganaxolone (GNX) to reduce seizures.
This study is for children and adults: • Ages 1 and above • Who have been diagnosed with Tuberous Sclerosis Complex (TSC)-related Epilepsy. • Are able to be in the study for 16-20 weeks...
This study is for children and adults: • Ages 1 and above • Who have been diagnosed with Tuberous Sclerosis Complex (TSC)-related Epilepsy. • Are able to be in the study for 16-20 weeks. The purpose of this research study is to find out if the study drug Ganaxolone (GNX) is safe and reduces the number of seizures you have when added to standard epilepsy treatment and drug(s).