Clinical trials: Neurodegenerative Disorders
Neurofibromatosis Type 1
A Randomized Placebo-Controlled Study of Lovastatin in Children With Neurofibromatosis Type 1
The specific aim of this study is to determine whether Lovastatin ™ significantly improves visual spatial learning and/or sustained attention in children with NF1.
- Trial name
- STARS (NCT00853580)
- Testing
- Lovastatin ™
- Where
- 12 sites in United States, Australia
- Volunteers
- 146 people, healthy volunteers welcome
- Sponsor
- University of Alabama at Birmingham
Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia
Palliative Care Needs of Children With Rare Diseases and Their Families
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making.
- Conditions
- Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency, CHARGE Syndrome
- Trial name
- FACE-Rare (NCT06938542)
- Testing
- Family Centered pediatric palliative care for family caregivers of children with rare diseases.
- Where
- United States
- Volunteers
- 480 people, healthy volunteers welcome
- Sponsor
- Children's National Research Institute
Alzheimer Disease, Late Onset, Stroke
Explore the Sharing Model Intervene to Improve the Knowledge, Attitudes, Service Intentions and Service Start-up Effects of the Eight Major Non-cancer Disease End-stage Caregivers on Well-being and Palliative Care
Since September 1st, 2009, Taiwan has begun to pay attention to the care of patients with organ failure, dementia and the elderly, and brought eight of non-cancer terminal patients into health insurance subsidies to implement the…
- Conditions
- Alzheimer Disease, Late Onset, Stroke, Heart Failure, Pulmonary Disease, Chronic Obstructive
- Trial name
- NCT05407272
- Testing
- Health Education Manual, manual
- Where
- Taiwan
- Volunteers
- 60 people, healthy volunteers welcome
- Sponsor
- Wen-Shiou Pan
Alström Syndrome (ALMS)
Clinical Study of a Single Ciliopathy: Alström Syndrome
The aim of the study is to characterize the clinical manifestations of ALMS within the ciliopathies to prevent complications and determine preventive and therapeutic targets.
- Trial name
- NCT02890550
- Where
- 14 sites in France
- Volunteers
- 75 people, healthy volunteers welcome
- Sponsor
- University Hospital, Strasbourg, France
Motor Disorders
Combined Artificial Intelligence and Mobile Application for Remote Infant Motor Screening: Development and Validation
The purpose of this study is therefore five-fold: (1) designation of an APP "Baby Go" version 3.0 to include the assessment, follow-up, and education functions for parental use at home, (2) development and validation of the AI…
- Trial name
- NCT06521918
- Where
- Taiwan
- Volunteers
- 242 people, healthy volunteers welcome
- Sponsor
- National Taiwan University Hospital
Charcot-Marie-Tooth Disease
A Registered Cohort Study on Charcot-Marie-Tooth Disease
The aim of the study is to analyze the natural history data data from Charcot-Marie-Tooth disease and related disorders in China, to assess the clinical, genetic, epigenetic features of patients with Charcot-Marie-Tooth disease…
- Trial name
- NCT04010188
- Where
- China
- Volunteers
- 500 people, healthy volunteers welcome
- Sponsor
- Ning Wang, MD., PhD.
Huntington's Disease
HDClarity: a Multi-site Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington's Disease
HDClarity will seek at least 2500 research participants at different stages of Huntington's disease (HD). The primary objective is to collect a high quality CSF sample for evaluation of biomarkers and pathways that will enable…
- Trial name
- HDClarity (NCT02855476)
- Where
- 40 sites in United States, Canada and 8 more
- Volunteers
- 2,500 people, healthy volunteers welcome
- Sponsor
- University College, London
Multiple Sclerosis - Relapsing Remitting, Clinically Isolated Syndrome, CNS Demyelinating
DTI in Children With Multiple Sclerosis
This is a prospective, non-randomised, non-blinded, single center study of children and adolescents with multiple sclerosis and clinically isolated syndrome to detect differences or early changes in diffusion-weighted imaging…
- Trial name
- NCT02361697
- Testing
- DTI-MRI
- Where
- Germany
- Volunteers
- 15 people, healthy volunteers welcome
- Sponsor
- University Hospital Muenster
Neurofibromatosis 1, Social Skills
Pilot Randomized Control Trial of Telehealth Group for Improving Peer Relationships (PEERS) in NF1
This is a pilot randomized control trial of the UCLA PEERS protocol delivered via Telehealth with teens with neurofibromatosis type 1 whose parents report that they have difficulty making and keeping friends.
- Trial name
- NCT04860362
- Testing
- PEERS
- Where
- United States
- Volunteers
- 30 people, healthy volunteers welcome
- Sponsor
- University of Wisconsin, Milwaukee
Cardiovascular Diseases, Hypertrophic Cardiomyopathy (HCM)
AI-enabled Screening and Diagnosis of Cardiomyopathies Using Coronary CTA
The goal of this observational and diagnostic study is to develop and validate an artificial intelligence assisted approach for coronary computer tomography angiography-(CCTA)-based screening and diagnosis of cardiomyopathies in…
- Conditions
- Cardiovascular Diseases, Hypertrophic Cardiomyopathy (HCM), Dilated Cardiomyopathy (DCM), Restrictive Cardiomyopathy
- Trial name
- Atlantis (NCT06748261)
- Testing
- CCTAI model
- Volunteers
- 5,000 people, healthy volunteers welcome
- Sponsor
- Shanghai Zhongshan Hospital
Alzheimer Disease, Alzheimer Disease, Late Onset
Effectiveness of Alzheimer's Universe (Www.AlzU.Org) on Knowledge and Behavior
To evaluate the effectiveness of an online educational course on Alzheimer's disease (AD) prevention, treatment and caregiving.
- Conditions
- Alzheimer Disease, Alzheimer Disease, Late Onset, Memory Loss, Patient Education as Topic
- Trial name
- NCT03149380
- Testing
- Web-based education
- Where
- United States
- Volunteers
- healthy volunteers welcome
- Sponsor
- Weill Medical College of Cornell University
Diabetes, Senile Dementia, Alzheimer Type
A Study of Mobile Medical Supportive Care Program for Family Caregivers With Dementia Combined With Diabetes
The purpose of this project is to evaluate the effectiveness of the clinical application of a mHealth supportive care program for family caregivers with dementia combined with diabetes based on the supportive care framework.
- Trial name
- NCT06785857
- Testing
- mHealth Supportive Care Program, Offline supportive care
- Where
- China
- Volunteers
- 60 people, healthy volunteers welcome
- Sponsor
- Yuanjiao Yan
Hereditary Spastic Paraparesis
SNAP: Measurement of the Subjective Perception of the Symptom in Hereditary Spastic Paraparesis (HSP)
The Self-Notion and Perception (SNAP) questionnaire developed at IRCCS E.Medea by Eleonora Diella and Roberta Morganti, arises from the need to quantify the subjective perception of the patient suffering from HSP of the typical…
- Trial name
- NCT04256681
- Testing
- SNAP questionnaire
- Where
- Italy
- Volunteers
- 80 people, healthy volunteers welcome
- Sponsor
- IRCCS Eugenio Medea
Huntington Disease, Hereditary Breast and Ovarian Cancer
Genetic Risk: Whether, When, and How to Tell Adolescents
This study is being conducted to learn more about family communication of genetic risk information. Semi-structured interviews lasting up to one hour will be conducted with three populations: parent/child pairs at risk for…
- Conditions
- Huntington Disease, Hereditary Breast and Ovarian Cancer, Hereditary Cancer, Hereditary Non-polyposis Colon Cancer
- Trial name
- NCT03421327
- Where
- United States
- Volunteers
- 85 people, healthy volunteers welcome
- Sponsor
- Johns Hopkins University
Dementia, Alzheimer Disease
Multidisciplinary Expert System for the Assessment & Management of Complex Brain Disorders
The Multidisciplinary Expert System for the Assessment \& Management of Complex Brain Disorders (MES-CoBraD) is an interdisciplinary project combining Real-World Data (RWD) from multiple clinical and consumer sources through…
- Conditions
- Dementia, Alzheimer Disease, Epilepsy, Sleep Disorder
- Trial name
- MES-CoBraD (NCT05171725)
- Testing
- EEG,PSG, biosample collection (blood and CSF), neuropsychological testing
- Where
- 4 sites in Greece, Israel and 2 more
- Volunteers
- 635 people, healthy volunteers welcome
- Sponsor
- Neurological Institute of Athens
Late Infantile Neuronal Ceroid Lipofuscinosis, Batten Disease
Collection of Cerebrospinal Fluid in Healthy Children
The purpose of this study is to obtain cerebrospinal fluid from healthy children already undergoing a lumbar puncture procedure at New York Presbyterian Hospital, to act as healthy controls when compared to children with late…
- Trial name
- NCT01698229
- Testing
- Group 1
- Where
- United States
- Volunteers
- 32 people, healthy volunteers welcome
- Sponsor
- Weill Medical College of Cornell University
Diabetic Retinopathy, Neurodegeneration
Retinal Neurodegenerative and Vascular Changes in Diabetic Patients
Using Optical Coherence Tomography and ImageJ software the investigators will analyze retinal and choroidal vascular changes and their impact on retinal layers among patients with diabetes without retinopathy and patients with…
- Trial name
- NCT04637217
- Testing
- Optical Coherence Tomography
- Where
- Romania
- Volunteers
- 97 people, healthy volunteers welcome
- Sponsor
- Iuliu Hatieganu University of Medicine and Pharmacy
Spinal Muscular Atrophy
Neonatal Spinal Muscular Atrophy (SMA) Screening
Parents or legal guardian of neonates who signed agreement will receive SMA screening test if their neonates are affected with SMA.
- Trial name
- SMA (NCT03217578)
- Testing
- SMA Newborn Screening
- Where
- Taiwan
- Volunteers
- 250,000 people, healthy volunteers welcome
- Sponsor
- Kaohsiung Medical University Chung-Ho Memorial Hospital
Amyotrophic Lateral Sclerosis
Italian Validation of the Beaumont Behavioural Inventory (BBI)
Up to 50% of patients affected with amyotrophic lateral sclerosis (ALS) can show behavioral dysfunctions within the spectrum of frontotemporal degenerations (FTD) - namely, apathy, disinhibition, loss of sympathy/empathy…
- Trial name
- BBI (NCT04440644)
- Testing
- BBI
- Where
- Italy
- Volunteers
- 190 people, healthy volunteers welcome
- Sponsor
- Istituti Clinici Scientifici Maugeri SpA
Anxiety Acute, Anxiety Fear
Paediatric Peri-operative Anxiety: Does the Little Journey App Help?
To evaluate the clinical effectiveness of a virtual reality psychological preparation app at reducing peri-operative anxiety and its associated sequelae in children aged 3-12 years old undergoing ambulatory surgery compared to…
- Conditions
- Anxiety Acute, Anxiety Fear, Peri-operative, Psychological Distress
- Trial name
- NCT03797716
- Testing
- Little Journey app
- Where
- 17 sites in United Kingdom
- Volunteers
- 596 people, healthy volunteers welcome
- Sponsor
- University College, London