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.
International Pediatric Stroke Study (IPSS) : A study to collect Data on Pediattic Strokes.
This study is collecting data from patients: • Who suffered a stroke or transient ischemic attack (TIA)...
This study is collecting data from patients: • Who suffered a stroke or transient ischemic attack (TIA) The International Pediatric Stroke Study (IPSS) Registry collects data on pediatric strokes. It aims to establish a repository of clinical and imaging data relating to stroke risk factors, presentation, treatment strategies, and outcome trajectory (recovery, recurrences) by conducting chart reviews and data abstraction (clinical and imaging), as well as administrating neurological assessments. The goal of the registry is to further understand, prevent, and improve outcomes in pediatric stroke.
MRI Brain Results: A survey to understand families experience understanding radiology results
This study is for: Children age 0-17 who had a clinical MRI Brain at Children's Mercy The goal of this study is to to evaluate the usability, workflow integration, and user comprehension of an...
This study is for: Children age 0-17 who had a clinical MRI Brain at Children's Mercy The goal of this study is to to evaluate the usability, workflow integration, and user comprehension of an investigational Quantitative MRI platform. This study is intended to gather feedback on the design and functionality of the platform and is not evaluating clinical effectiveness or diagnostic accuracy.
Portable MRI (pMRI) for Pediatric Hypoxic Ischemic Brain Injury (HIBI): Targeting early diagnosis and Improve Outcomes
This study is for patients: • Admitted to the NICU, PICU or CICU • Have a standard MRI or CT already ordered. • Can have a portable MRI exam at the bedside...
This study is for patients: • Admitted to the NICU, PICU or CICU • Have a standard MRI or CT already ordered. • Can have a portable MRI exam at the bedside The goal of our study is to determine the sensitivity and specificity of a portable MRI compared to a standard MRI. There are many patients in the ICU setting that cannot travel to radiology to obtain an MRI. By using a portable MRI machine, the team can detect and treat acute ischemic brain injuries earlier and have better patient outcomes.