Clinical trials: Natural History
Multisystemic Smooth Muscle Dysfunction Syndrome, ACTA2
A Retrospective and Prospective Natural History of Genetic Vasculopathies
This study will combine retrospective review of medical records from patients with ACTA2 and ongoing collection of clinical data using standardized instruments and intervals on an observational basis from patients with ACTA2.
- Trial name
- NCT06552052
- Where
- United States
- Volunteers
- 50 people
- Sponsor
- Massachusetts General Hospital
IRB Decision Making
Mapping Institutional Identities and the Production of Ethics
Background: Researchers want to learn how members of IRB committees interact with each other. They want to see how this affects the decision-making process.
- Trial name
- NCT03983863
- Where
- United States
- Volunteers
- 61 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Intraventricular Hemorrhage, Intracerebral Hemorrhage
The Natural History of Procalcitonin in Hemorrhagic Stroke
Approximately 12% of strokes in the United States are hemorrhagic.1 Hemorrhagic stroke can lead to multiple complications including fever that is not infectious.
- Trial name
- NCT01498705
- Testing
- Procalcitonin level
- Where
- United States
- Sponsor
- CAMC Health System
COVID-19 Infection, Hematopoietic and Lymphatic System Neoplasm
NCI COVID-19 in Cancer Patients, NCCAPS Study
This study collects blood samples, medical information, and medical images from patients who are being treated for cancer and have a positive test for SARS CoV-2, the new coronavirus that causes the disease called COVID-19.
- Conditions
- COVID-19 Infection, Hematopoietic and Lymphatic System Neoplasm, Malignant Solid Neoplasm, Metastatic Malignant Solid Neoplasm
- Trial name
- NCT04387656
- Testing
- Biospecimen Collection, Data Collection, Quality-of-Life Assessment
- Where
- 932 sites in United States, Canada and 1 more
- Volunteers
- 1,877 people
- Sponsor
- National Cancer Institute (NCI)
KCNT1-Related Epilepsy
A Natural History Study of Participants With Potassium Sodium-Activated Channel Subfamily T Member 1 (KCNT1)-Related Epilepsy
The primary objective of the study is to characterize seizures in participants with KCNT1-related epilepsy. The secondary objectives are to characterize head growth, symptom severity, neurocognitive and social functions, adaptive…
- Trial name
- K1Te (NCT04924153)
- Testing
- No Intervention
- Where
- United States
- Volunteers
- 35 people
- Sponsor
- Biogen
Congenital Central Hypoventilation Syndrome
CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)
The purpose of this study is to capture longitudinal natural history data in Congenital Central Hypoventilation Syndrome (CCHS).
- Trial name
- NCT06554275
- Where
- United States
- Volunteers
- 125 people
- Sponsor
- Ann & Robert H Lurie Children's Hospital of Chicago
Smith Lemli Opitz Syndrome, CHILD Syndrome
Biochemical and Phenotypical Aspects of Smith-Lemli-Opitz Syndrome and Related Disorders of Cholesterol Metabolism
Background: Smith-Lemli-Opitz Syndrome (SLOS) is a genetic disorder. It can cause birth defects and developmental delays. There is no cure for SLOS or other inherited diseases related to cholesterol production or storage.
- Conditions
- Smith Lemli Opitz Syndrome, CHILD Syndrome, Lathosterolosis, Desmosterolosis
- Trial name
- NCT05047354
- Where
- United States
- Volunteers
- 250 people, healthy volunteers welcome
- Sponsor
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Leber's Hereditary Optic Neuropathy (LHON)
Study to Assess the Efficacy and Safety of Raxone in LHON Patients
LEROS is an open-label interventional Phase IV study, designed to further assess the efficacy and safety of Raxone® in the long-term treatment of LHON patients.
- Trial name
- LEROS (NCT02774005)
- Testing
- Idebenone
- Where
- 29 sites in United States, Austria and 8 more
- Volunteers
- 199 people
- Sponsor
- Santhera Pharmaceuticals
Prostate Cancer, Pesticide Exposures
Agriculture Health Study
The "Agricultural Health Study" (AHS) is a collaborative effort between the National Cancer Institute and the National Institute of Environmental Health Sciences. The U.S.
- Conditions
- Prostate Cancer, Pesticide Exposures, Lymphoma, Multiple Myeloma
- Trial name
- NCT00352924
- Where
- United States
- Volunteers
- 89,655 people
- Sponsor
- National Cancer Institute (NCI)
Sarcoma, Endocrine Tumors
Comprehensive Omics Analysis of Pediatric and Adult Solid Tumors and Establishment of a Repository for Related Biological Studies
Background: Laboratory investigators who are studying common childhood cancers are interested in developing a tissue repository to collect and store blood, serum, tissue, urine, or tumors of children who have cancer or adults who…
- Conditions
- Sarcoma, Endocrine Tumors, Neuroblastoma, Retinoblastoma
- Trial name
- NCT01109394
- Where
- 5 sites in United States
- Volunteers
- 6,035 people, healthy volunteers welcome
- Sponsor
- National Cancer Institute (NCI)
Psoriasis
Effect of Chronic Inflammation on Myocardial Perfusion and Function
Background: Heart failure (HF) is a public health burden. Studies have shown a link between inflammation, myocardial dysfunction, and HF.
- Trial name
- NCT04870827
- Testing
- 13N Amonia
- Where
- United States
- Volunteers
- 16 people, healthy volunteers welcome
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
Cardiac Risk Factors, Healthy
Imaging Techniques in MRI
Background: Magnetic resonance imaging (MRI) scans must be performed according to specified sets of parameters that provide optimal images of each organ and each area of the body.
- Conditions
- Cardiac Risk Factors, Healthy, Healthy Volunteers
- Trial name
- NCT01130545
- Where
- United States
- Volunteers
- 1,000 people, healthy volunteers welcome
- Sponsor
- National Institutes of Health Clinical Center (CC)
Cardiomyopathy
Natural History Study in Pediatric Patients With MYBPC3 Mutation-associated Cardiomyopathy
The objective of this study is to collect information on patients with cardiomyopathy (CM) due to mutations in the MYBPC3 gene, to evaluate their disease course, burden of illness, risk factors for this disease, and the quality…
- Trial name
- MyCLIMB (NCT05112237)
- Where
- 29 sites in United States, Canada and 2 more
- Volunteers
- 200 people
- Sponsor
- Tenaya Therapeutics
Inflammatory Bowel Diseases, Crohn Disease
IDENTIFICATION OF PROGNOSTIC AND PREDICTIVE BIOMARKERS IN INFLAMMATORY BOWEL DISEASE
Interventional study of a group of patients with an inflammatory bowel disease (IBD; Crohn's disease (CD) or ulcerative colitis (UC)) to identify predictive and prognostic biomarkers of natural history and response to…
- Conditions
- Inflammatory Bowel Diseases, Crohn Disease, Ulcerative Colitis
- Trial name
- i-BANK (NCT03809728)
- Testing
- endoscopic biopsy, samples of the oral cavity, Samples of the resected specimen
- Where
- France
- Volunteers
- 1,000 people
- Sponsor
- Central Hospital, Nancy, France
Pseudo Exfoliation Syndrome
Natural History of IOL in Pseudo Exfoliation Syndrome
The purpose of this study is to determine the natural course of IOL in PXF, To demonstrate use of a clinical grading system for PXF, To strategize a way to prevent IOL dislocation, subluxation post operatively, To demonstrate…
- Trial name
- PXF (NCT01255995)
- Testing
- Capsular Tension Ring
- Where
- 4 sites in India
- Volunteers
- 1,500 people
- Sponsor
- Aurolab
Hearing Disorder, Oral Mucosal Disease
Biospecimen Procurement for Head and Neck Disorders
Background: Researchers want to learn more about head and neck disorders. Understanding these disorders could help them find better treatments. To do this, they are collecting tissue samples for research.
- Conditions
- Hearing Disorder, Oral Mucosal Disease, Pharyngeal Neoplasm, Head and Neck Neoplasms
- Trial name
- NCT03429036
- Where
- 9 sites in United States
- Volunteers
- 1,000 people
- Sponsor
- National Cancer Institute (NCI)
Primary Lateral Sclerosis
Screening and Natural History: Primary Lateral Sclerosis and Related Disorders
Objective: The objectives of this protocol are: to develop and maintain a repository of clinically characterized patients with primary lateral sclerosis for future research protocols, to characterize the natural history of…
- Trial name
- NCT00015444
- Where
- United States
- Volunteers
- 189 people
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Asperger's Disorder, Mental Retardation
Cognitive Neuroscience of Autism Spectrum Disorders
Background: Autism spectrum disorders (ASDs) are a group of developmental disorders that affect communication, social interaction, and behavior.
- Conditions
- Asperger's Disorder, Mental Retardation, Children, Adult
- Trial name
- NCT01031407
- Where
- United States
- Volunteers
- 678 people
- Sponsor
- National Institute of Mental Health (NIMH)
Neuromuscular Disease, Motor Neuron Disease
Electrical Impedance Myography: Natural History Studies inNeuromuscular Disorders and Healthy Volunteers
Background: Electrical impedance myography (EIM) is a new technique being studied to see if it is helpful in evaluating muscle disorders and nerve disorders.
- Conditions
- Neuromuscular Disease, Motor Neuron Disease, Inherited Neuromuscular Conditions, Inherited Neuropathies
- Trial name
- NCT01900132
- Testing
- EIM testing, Nerve & muscle ultrasonography, Nerve conduction studies
- Where
- United States
- Volunteers
- 275 people, healthy volunteers welcome
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Neurofibroma, Plexiform, Neurofibromatosis Type I
R115777 to Treat Children With Neurofibromatosis Type 1 and Progressive Plexiform Neurofibromas
This study will examine whether the experimental drug R115777 (Tipifarnib) can shrink or slow the growth of plexiform neurofibromas in children and young adults with neurofibromatosis type 1 (NF1) and determine what side effects…
- Trial name
- NCT00021541
- Testing
- tipifarnib
- Where
- 12 sites in United States, Germany
- Volunteers
- 62 people
- Sponsor
- National Cancer Institute (NCI)
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