Clinical trials: Natural History
Angelman Syndrome, Neurodevelopmental Conditions
A Natural History Study of Angelman Syndrome
The goal of this observational study is to learn about the natural progression of Angelman syndrome (AS) in children and adults with a confirmed genetic diagnosis of AS.
- Trial name
- GLOW-AS (NCT07417137)
- Where
- United States
- Volunteers
- 40 people
- Sponsor
- Massachusetts General Hospital
Progressive Multifocal Leukoencephalopathy
Natural History Study of Progressive Multifocal Leukoencephalopathy (PML)
Background: Progressive multifocal leukoencephalopathy (PML) is a severe viral infection of the brain. It is caused by JC virus.
- Trial name
- NCT01730131
- Where
- United States
- Volunteers
- 700 people, healthy volunteers welcome
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Hypertension, Essential Hypertension
Childhood-Onset Essential Hypertension Natural History Study
Background: Childhood-onset essential hypertension (COEH) is high blood pressure that develops in children and teens. High blood pressure is a major risk factor for heart disease.
- Trial name
- NCT06778239
- Where
- United States
- Volunteers
- 2,300 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Healthy
Expansion of Childhood Relationship Study to Young Adult Romantic Relationships
Background: An earlier study on child development focused on the relationship between children and their caregivers (usually mothers). It looked at how this relationship influenced children's social and mental development.
- Trial name
- NCT01866852
- Where
- United States
- Volunteers
- 259 people
- Sponsor
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Ease Of Access To Covid Vaccine
Adolescents Seeking COVID Vaccination (Teen COVID Vax)
Background: Information is limited on the experience of children aged 15 to 17 who have or have not been vaccinated against COVID-19.
- Trial name
- NCT05537103
- Where
- United States
- Volunteers
- 454 people, healthy volunteers welcome
- Sponsor
- National Institutes of Health Clinical Center (CC)
McCune-Albright Syndrome
Screening and Natural History of Patients With Polyostotic Fibrous Dysplasia and the McCune-Albright Syndrome
Polyostotic fibrous dysplasia (PFD) is a sporadic disorder which affects multiple sites in the skeleton. The bone at these sites is rapidly resorbed and replaced by abnormal fibrous tissue or mechanically abnormal bone.
- Trial name
- NCT00001727
- Where
- United States
- Volunteers
- 500 people
- Sponsor
- National Institute of Dental and Craniofacial Research (NIDCR)
Primary Immunodeficiency
Send-In Sample Collection to Achieve Genetic and Immunologic Characterization of Primary Immunodeficiencies
Background: The immune system helps the body fight infections. Primary immunodeficiency disorders (PIDs) are diseases that make it easier for people to get sick. Many PIDs are inherited.
- Trial name
- NCT03610802
- Where
- 3 sites in United States, Italy and 1 more
- Volunteers
- 3,000 people
- Sponsor
- National Institute of Allergy and Infectious Diseases (NIAID)
Pediatric Epilepsies
Natural History and Prognosis of Pediatric Epilepsies With Different Etiology
Epilepsy is one of the most common neurological diseases in Italy, affecting about 500,000 people. Pediatric age represents one of the most affected groups with a consequent significant impact on the quality of life of the…
- Trial name
- NCT07588971
- Where
- Italy
- Volunteers
- 2,300 people
- Sponsor
- Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Healthy Volunteers
Sample Collection From Healthy Volunteers for Assay Optimization
Background: The Laboratory of Immune System Biology (LISB) works with other labs at the National Institutes of Health. They study how parts of living things come together to make a whole.
- Trial name
- NCT03538600
- Where
- United States
- Volunteers
- 600 people, healthy volunteers welcome
- Sponsor
- National Institute of Allergy and Infectious Diseases (NIAID)
Retinitis Pigmentosa
A Prospective, Observational Study in Adults With Retinitis Pigmentosa (RP)
The natural history in individuals with severe retinitis pigmentosa (RP) is variable and there remains an unmet need to better understand disease progression in this population.
- Trial name
- NCT06517940
- Where
- United States
- Volunteers
- 12 people
- Sponsor
- Sumitomo Pharma America, Inc.
Nemaline Myopathy
Natural History Study for Patients With Nemaline Myopathy in Belgium
This is a prospective, longitudinal, observational study designed to characterize the natural history of Nemaline Myopathy (NM), a rare congenital neuromuscular disorder.
- Trial name
- Acti-Nemaline (NCT07201636)
- Testing
- Motor Function Assessments, Syde, Respiratory Assessments
- Where
- Belgium
- Volunteers
- 10 people
- Sponsor
- Centre Hospitalier Universitaire de Liege
COVID-19, Coronavirus 2019
Genetics of COVID-19 Susceptibility and Manifestations
Background: Coronavirus 2019 (COVID-19, or SARS-CoV-2) is a serious public health problem, and genetics may play a role in how serious the illness becomes in certain people.
- Trial name
- NCT04371432
- Where
- United States
- Volunteers
- 721 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Healthy Subjects
Prospective Evaluation of Next Generation CT Reconstruction (NextGenIR)
Background: Computed Tomography (CT) is a scan that makes detailed pictures of the body. It uses radiation to do that. In 2011, about 85.3 million CT scans were done in the United States.
- Trial name
- NCT02417714
- Where
- United States
- Volunteers
- 215 people
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
Focal Segmental Glomerulosclerosis, HIV-Associated Focal Segmental Glomerulosclerosis
Genetic Markers for Focal Segmental Glomerulosclerosis
Glomerulonephritis is a disease which affect the kidneys. Occasionally these diseases can progress to a loss of kidney function in some patients.
- Trial name
- NCT00001393
- Where
- United States
- Volunteers
- 616 people
- Sponsor
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Friedreich Ataxia
A Natural History Study to TRACK Brain and Spinal Cord Changes in Individuals with Friedreich Ataxia (TRACK-FA)
This is a natural history study prospectively investigating neuroimaging markers of disease progression in children and adults with Friedreich ataxia (FA). There will be three assessment periods (baseline, 12 and 24 months).
- Trial name
- (TRACK-FA) (NCT04349514)
- Testing
- Natural history
- Where
- 7 sites in United States, Australia and 3 more
- Volunteers
- 300 people, healthy volunteers welcome
- Sponsor
- Monash University
Ataxia
RFC1 Natural History Study
This international, multi-center, multi-modal and prospective observational study aims to determine the phenotypic spectrum and the natural progression of the RFC1 repeat expansion disease, and to seek and validate digital…
- Trial name
- RFC1-NHS (NCT05177809)
- Testing
- Clinical rating scale to measure ataxia disease severity and progression
- Where
- 10 sites in Australia, Brazil and 5 more
- Volunteers
- 150 people, healthy volunteers welcome
- Sponsor
- Prof. Dr. Matthis Synofzik
Drug Induced Liver Injury, Pruritus
Drug-induced Liver Injury: Itching Study
Idiosyncratic drug-induced liver injury (DILI) is an unpredictable adverse hepatic reaction to a medication used in its therapeutic dose.
- Trial name
- NCT06446609
- Where
- United Kingdom
- Volunteers
- 50 people
- Sponsor
- University of Nottingham
Anterior Blepharitis
Ocular Dysbiosis in Eyelid Disease
The goal of this observational study is to determine the presence and prevalence of fungal organisms in four distinct blepharitis populations.
- Trial name
- ODYSSEY (NCT07869498)
- Where
- 5 sites in United States
- Volunteers
- 60 people
- Sponsor
- Brent Kramer
Proteus Syndrome, PIK3CA Related Overgrowth Spectrum
Study of Proteus Syndrome and Related Congenital Disorders
This study will examine rare congenital disorders that involve malformations and abnormal growth. It will focus on patients with Proteus syndrome, whose physical features are characterized by overgrowth, benign tumors of fatty…
- Trial name
- NCT00001403
- Where
- United States
- Volunteers
- 1,500 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Focal Brain Lesion, Focal Lesions
Top-Down Attentional Control of Visual-Processing
Background: Previous studies have shown that people with certain types of brain damage may have particular problems paying attention and processing things that they see.
- Conditions
- Focal Brain Lesion, Focal Lesions, fMRI
- Trial name
- NCT01087281
- Where
- United States
- Volunteers
- 300 people, healthy volunteers welcome
- Sponsor
- National Institute of Mental Health (NIMH)
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