Clinical trials: Natural History
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
Sickle Cell Trait
Achieving Understanding of the Natural History of Sickle Cell Trait (AUNT)
The main purpose of this study is to create a longitudinal cohort of those with Sickle Cell Trait (SCT) to better understand the hematologic phenotype for those that carry HbS, assess for differences in those with varying…
- Trial name
- NCT06071377
- Testing
- Biologic Specimen Collection
- Where
- 8 sites in United States
- Volunteers
- 1,000 people, healthy volunteers welcome
- Sponsor
- National Alliance for Sickle Cell Centers
Cardiovascular Diseases, Coronary Disease
Natural History of Coronary Heart Disease
To examine the natural history of mortality due to coronary heart disease in post-myocardial infarction patients from the Beta-Blocker Heart Attack Trial (BHAT) and the Aspirin Myocardial Infarction Study (AMIS).
- Conditions
- Cardiovascular Diseases, Coronary Disease, Myocardial Infarction, Heart Diseases
- Trial name
- NCT00005265
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
Charcot-Marie-Tooth Disease (CMT)
Research of SORD-CMT Natural History and Epalrestat Treatment
Charcot-Marie-Tooth disease (CMT) is a group of the most common hereditary peripheral neuropathy with high clinical and genetic heterogeneity.
- Trial name
- SORD-CMT (NCT05777226)
- Testing
- Epalrestat
- Volunteers
- 30 people
- Sponsor
- The Third Xiangya Hospital of Central South University
Severe Combined Immunodeficiency
Gene Transfer Therapy for Severe Combined Immunodeficieny Disease (SCID) Due to Adenosine Deaminase (ADA) Deficiency: A Natural History Study
This study will monitor the long-term effects of gene therapy in patients with severe combined immunodeficiency disease (SCID) due to a deficiency in an enzyme called adenosine deaminase (ADA).
- Trial name
- NCT00001255
- Testing
- ADA PBSC, ADA Umbilical Cord Blood Cells, Transduced Lymphocytes
- Where
- United States
- Volunteers
- 10 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Barrett Esophagus, Barretts Esophagus With Dysplasia
Natural History of Barrett's Esophagus Using Tethered Capsule Endomicroscopy
The goal of this research is to determine the natural history of Barrett's esophagus (BE) using tethered capsule endomicroscopy (TCE) in participants undergoing surveillance endoscopy.
- Trial name
- NCT02994693
- Testing
- OFDI capsule imaging
- Where
- United States
- Volunteers
- 100 people
- Sponsor
- Massachusetts General Hospital
Leukemia, Lymphoma
Leukapheresis for CAR or Adoptive Cell Therapy Manufacturing
Background: Leukapheresis is a procedure to separate and collect white blood cells. It is the first step in a treatment called CAR (chimeric antigen receptor) T-cell therapy.
- Conditions
- Leukemia, Lymphoma, Acute Lymphoblastic Leukemia, Diffuse Large B Cell Lymphoma
- Trial name
- NCT03226704
- Testing
- Leukapheresis
- Where
- United States
- Volunteers
- 120 people
- Sponsor
- National Cancer Institute (NCI)
Age-Related Macular Degeneration, Diabetic Retinopathy
National Eye Institute Biorepository for Retinal Diseases
Background: To understand diseases of the retina and the eye, information is needed about people with and without such diseases. Researchers want to study these people and follow them over time.
- Conditions
- Age-Related Macular Degeneration, Diabetic Retinopathy, Von Hippel-Lindau Syndrome, Retinal Disease
- Trial name
- NCT01496625
- Where
- United States
- Volunteers
- 650 people, healthy volunteers welcome
- Sponsor
- National Eye Institute (NEI)
Williams Syndrome, Supravalvular Aortic Stenosis
Impact of Elastin Mediated Vascular Stiffness on End Organs
Background: People with Williams Syndrome (WS) and supravalvular aortic stenosis (SVAS) have less elasticity in their blood vessels. This is called blood vessel stiffness.
- Conditions
- Williams Syndrome, Supravalvular Aortic Stenosis, Cardiovascular Disease
- Trial name
- NCT02840448
- Where
- 2 sites in United States
- Volunteers
- 159 people, healthy volunteers welcome
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
Systemic Sclerosis, Scleroderma
Multi-center, Web Based Observational Study of Pulmonary Hypertension in Scleroderma Patients
The purpose of this study is to determine the timeline of progression from pre-pulmonary hypertension to diagnosable pulmonary hypertension based on right heart catheterization.
- Conditions
- Systemic Sclerosis, Scleroderma, Pulmonary Hypertension, Pulmonary Arterial Hypertension
- Trial name
- NCT00377949
- Where
- 25 sites in United States
- Volunteers
- 602 people
- Sponsor
- Georgetown University
Prion Diseases
PROSPECT Registry for Individuals at Risk for Genetic Prion Disease
PROSPECT is a prospective observational registry and longitudinal natural history study of adults at risk for genetic prion disease.
- Trial name
- PROSPECT (NCT07732608)
- Where
- United States
- Volunteers
- 2,000 people, healthy volunteers welcome
- Sponsor
- Brian Appleby
Mucopolysaccharidosis III-A
A Natural History Study of Biomarkers and Clinical Outcomes in Mucopolysaccharidosis Type IIIA (MPS IIIA; Sanfilippo Syndrome)
This protocol is a decentralized, single cohort, natural history and biomarker study enrolling up to 20 participants with MPS IIIA (Sanfilippo syndrome).
- Trial name
- NCT05523206
- Testing
- No intervention
- Where
- United States
- Volunteers
- 15 people
- Sponsor
- Sanguine Biosciences
Zellweger Spectrum Disorder
Longitudinal Prospective Natural History Study of Retinopathy in Zellweger Spectrum Disorder
The goal of this observational study is to define the course of the retinal degeneration in a ZSD patient cohort. The objective of this study is to gather information so the investigators can: 1.
- Trial name
- ZSDvision (NCT06190626)
- Where
- 3 sites in United States, Canada
- Volunteers
- 30 people
- Sponsor
- McGill University Health Centre/Research Institute of the McGill University Health Centre
Evaluation of Plasma Lipoproteins
Evaluation of Lipoproteins
Lipoproteins are particles that carry fats such as cholesterol and triglycerides through the blood stream. These particles are involved in causing blood vessel disease that can lead to conditions like hardening of the arteries…
- Trial name
- NCT00001168
- Testing
- Balanced diet
- Where
- United States
- Volunteers
- 1,017 people
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
COVID-19
A Clinical Observational Study of SARS-CoV-2 Specific CD8 T-Cell Responses to COVID-19 Vaccines in Humans
Background: The immune response is how the body recognizes and defends itself against foreign and harmful substances. Researchers want to compare the immune responses between young and older healthy adults after they receive…
- Trial name
- NCT04852289
- Where
- 2 sites in United States
- Volunteers
- 78 people
- Sponsor
- National Institute on Aging (NIA)
Eosinophilic Disease, Immune Deficiency
Screening Protocol for Genetic Diseases of Allergic Inflammation
Background: Mast cells are responsible for most symptoms of allergic reactions. In some allergic diseases, it is unusually easy to cause mast cells to release their contents and cause allergic reactions.
- Conditions
- Eosinophilic Disease, Immune Deficiency, HaTS, Urticaria Anaphylaxis
- Trial name
- NCT00852943
- Where
- United States
- Volunteers
- 834 people
- Sponsor
- National Institute of Allergy and Infectious Diseases (NIAID)
Healthy Volunteer, Traumatic Brain Injury
Estimating Brain Biomechanics Using MRI
Objective: In this study we will develop and apply imaging techniques to perform the first three-dimensional (3-D) measurements of brain biomechanics during mild head movement in healthy human subjects.
- Conditions
- Healthy Volunteer, Traumatic Brain Injury, Brain Mapping, Craniocerebral Trauma
- Trial name
- NCT01633268
- Where
- United States
- Volunteers
- 101 people, healthy volunteers welcome
- Sponsor
- National Institutes of Health Clinical Center (CC)
Spinocerebellar Ataxia Type 3, Machado-Joseph Disease
Natural History of Oculomotor Neurophysiology in Ataxic and Pre-ataxic Carriers of SCA3/MJD
The study will consist of a prospective observation of subjects in a natural history design. Disease progression will be monitored through clinical scales and video-oculography.
- Trial name
- BIGPRO (NCT04229823)
- Testing
- Video-oculography, Clinical Scales, Genotyping
- Where
- Brazil
- Volunteers
- 95 people, healthy volunteers welcome
- Sponsor
- Hospital de Clinicas de Porto Alegre
Familial Cancer, BRCA1-Associated Protein-1 (BAP1) Mutations
Prospective Evaluation of High Resolution Dual Energy Computed Tomographic Imaging, Noninvasive (Liquid) Biopsies, and Minimally Invasive Surgical Surveillance for Early Detection of Mesotheliomas in Patients With BAP1 Tumor Predisposition Syndrome
Background: A germline mutation is a change to a person s genes that is carried through their DNA. These mutations can be passed on from parents to their offspring.
- Conditions
- Familial Cancer, BRCA1-Associated Protein-1 (BAP1) Mutations, Tumor Predisposition Syndrome (TPDS), Mesothelioma
- Trial name
- NCT04431024
- Where
- United States
- Volunteers
- 300 people, healthy volunteers welcome
- Sponsor
- National Cancer Institute (NCI)
Head and Neck Neoplasms
Study to Evaluate the Natural History of Head and Neck Cancer Precursors in Taiwan
Background: Cancer of the mouth and throat is one of the most common cancers in Taiwan. This cancer develops over several years, beginning as white or red patches in the mouth or throat that become growths.
- Trial name
- NCT02017288
- Where
- 4 sites in Taiwan
- Volunteers
- 3,576 people, healthy volunteers welcome
- Sponsor
- National Cancer Institute (NCI)
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