Clinical trials: Natural History
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
Arterial Calcification Due to Deficiency of CD73
Diagnosis and Treatment of Patients With Inborn Errors of Metabolism
Researchers intend on diagnosing and treating certain inborn errors of metabolism. By doing this researchers hope to expand their knowledge about these disorders and provide access to patients of interest for research, teaching…
- Trial name
- NCT00369421
- Where
- United States
- Volunteers
- 4,000 people, healthy volunteers welcome
- Sponsor
- National Human Genome Research Institute (NHGRI)
Homozygous Familial Hypercholesterolemic
Cardiovascular Evaluation of Patients With High Cholesterol and Normal Volunteers
Homozygous familial hypercholesterolemia is a rare inherited disease of metabolism. It occurs in less than 1 in 1 million people within the United States.
- Trial name
- NCT00001204
- Where
- United States
- Volunteers
- 73 people
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
Lyphoma, B-Cell, Leukemia, B-cell
Gene Therapy Follow-up Protocol for People Previously Enrolled in CAR-T Cell Studies
Background: Gene therapy is a way to treat or prevent disease using genes. It is monitored very closely by regulators because there can be long-term, unexpected side effects.
- Conditions
- Lyphoma, B-Cell, Leukemia, B-cell, Multiple Myeloma, Hematologic Malignancies
- Trial name
- NCT02473757
- Where
- United States
- Volunteers
- 1,000 people
- Sponsor
- National Cancer Institute (NCI)
Motor Neuron Disease, Amyotrophic Lateral Sclerosis
Clinical Characteristics, Natural History, Health Care Measures, and Genetic Screening in Patients With ALS
Patients with sporadic ALS (sALS), which refers to those without a family history of ALS, are typically not subjected to genetic investigations as part of their standard care. Therefore, their mutation status is often unknown.
- Trial name
- ID-ALS (NCT05852405)
- Where
- Germany
- Volunteers
- 2,000 people
- Sponsor
- Ambulanzpartner Soziotechnologie APST GmbH
Amyotrophic Lateral Sclerosis (ALS), Amyotrophic Lateral Sclerosis &Amp; Other Neuromuscular Disorders
Amyotrophic Lateral Sclerosis: A Multicenter Retrospective Observational Registry
This retrospective observational study will analyze de-identified clinical data from patients with amyotrophic lateral sclerosis (ALS) collected at multiple centers over 7 years.
- Trial name
- NCT07143656
- Testing
- Imaging and Clinical Reports
- Where
- Poland
- Volunteers
- 36 people
- Sponsor
- Biocells Medical
Ehlers-Danlos Syndrome
Registry of Ehlers-Danlos Syndrome
RED is a retrospective and prospective registry, finalized for care and research purposes. It is articulated in main sections - strongly related and mutually dependent on each other - corresponding to different data domains…
- Trial name
- RED (NCT04133272)
- Where
- Italy
- Volunteers
- 3,000 people, healthy volunteers welcome
- Sponsor
- Luca Sangiorgi
Progressive Myoclonus Epilepsy Type 1, EPM1
Registry and Natural History Study for Progressive Myoclonus Epilepsy Type 1 (EPM1)
The Registry and Natural History Study for Progressive Myoclonus Epilepsy Type 1 (EPM1) is focused on gathering longitudinal clinical data as well as biological samples (blood and/or urine) from male and female patients, of all…
- Conditions
- Progressive Myoclonus Epilepsy Type 1, EPM1, CSTB-related Disease, Myoclonus Epilepsies, Progressive
- Trial name
- EPM1 (NCT06593951)
- Where
- United States
- Volunteers
- 200 people
- Sponsor
- Boston Children's Hospital
Abdominal Surgery, Thoracic Surgery
Collecting Interval Timed Incisional Epidermal and Dermal Tissue Samples During Surgical Procedures to Profile Temporal Response of Tissue After Noxious Stimuli
Background: Opioids are a class of drug that are often used to manage pain after a person has surgery. Because of the current opioid crisis, researchers want to improve ways to manage pain after surgery with fewer side effects.
- Conditions
- Abdominal Surgery, Thoracic Surgery, Urological Surgery
- Trial name
- NCT04224870
- Where
- United States
- Volunteers
- 12 people
- Sponsor
- National Institutes of Health Clinical Center (CC)
Mesothelioma, Families
Long Term Follow-Up of Patients With Mesothelioma and Individuals With Germline Mutations in BAP1
Background: -A gene provides instructions to the body. Mutated genes can sometimes cause cancer. Germline mutations are those people are born with. These mutations in the BAP1 gene can cause mesothelioma and other cancers.
- Trial name
- NCT03830229
- Where
- United States
- Volunteers
- 1,000 people
- Sponsor
- National Cancer Institute (NCI)
Carcinoid
Natural History of Familial Carcinoid Tumor
This study will evaluate members in families with a history of small bowel carcinoid cancer to study the natural history of those family members that have the disease, determine ways to improve early detection by performing…
- Trial name
- NCT00646022
- Testing
- [18F]-DOPA
- Where
- United States
- Volunteers
- 1,600 people
- Sponsor
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Pulmonary Fibrosis, Healthy Volunteers
Analysis of Specimens From Individuals With Pulmonary Fibrosis
The etiology of pulmonary fibrosis is unknown. Analyses of blood, genomic DNA, and specimens procured by bronchoscopy, lung biopsy, lung transplantation, clinically-indicated extra-pulmonary biopsies, or post-mortem examination…
- Conditions
- Pulmonary Fibrosis, Healthy Volunteers, Hermansky-Pudlak Syndrome (HPS)
- Trial name
- NCT00084305
- Where
- United States
- Volunteers
- 315 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Tumor, Carcinogens
Collection of Tissue Blocks or Slides From Patients With Cancer
BACKGROUND: Cancer of any type is a serious disease and despite all the progress made from past research, there is still much that is poorly understood at the molecular level.
- Conditions
- Tumor, Carcinogens, Neoplasm, Benign, Benign Neoplasms
- Trial name
- NCT02810405
- Where
- United States
- Volunteers
- 191 people
- Sponsor
- National Cancer Institute (NCI)
CADASIL
Research Study on Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy (CADASIL)
The purpose of this study is to delineate early neurological features and their progression in patients with cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) in order to…
- Trial name
- NCT01114815
- Where
- United States
- Volunteers
- 100 people
- Sponsor
- NYU Langone Health
Aspartylglucosaminuria, Aspartylglucosamidase (AGA) Deficiency
A Natural History Study of Aspartylglucosaminuria
Aspartylglucosaminuria (AGU) is a rare neurodegenerative lysosomal storage disease (LSD) characterized by developmental delay, psychomotor regression, worsening intellectual disability, gait disturbance and, ultimately, premature…
- Conditions
- Aspartylglucosaminuria, Aspartylglucosamidase (AGA) Deficiency, Lysosomal Storage Diseases
- Trial name
- AGU (NCT03853876)
- Where
- United States
- Volunteers
- 8 people
- Sponsor
- Neurogene Inc.
Stiff-Person Syndrome
Cause, Development, and Progression of Stiff-Person Syndrome
This study will explore the role of various immune factors involved in producing the disease symptoms in stiff-person syndrome (SPS) and follow disease progression in patients.
- Trial name
- NCT00030940
- Where
- 2 sites in United States
- Volunteers
- 40 people
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Movement Disorder
Phenotype/Genotype Correlations in Movement Disorders
The goal of this protocol is to identify families with inherited movement disorders and evaluate disease manifestations to establish an accurate clinical diagnosis by using newest technological advances and investigate the…
- Trial name
- NCT00018889
- Where
- United States
- Volunteers
- 2,500 people
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Brown Adipose Tissue (BAT) Physiology, Phenotyping
Molecular, Cellular, and Genetic Characterization of Human Adipose Tissue and Its Role in Metabolism
Background: The body uses energy from calories for basic functions like breathing and digesting food. Over time, when a person eats more calories than they burn, they may become overweight or obese.
- Conditions
- Brown Adipose Tissue (BAT) Physiology, Phenotyping, Brown Adipocytes
- Trial name
- NCT02692885
- Where
- United States
- Volunteers
- 300 people, healthy volunteers welcome
- Sponsor
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Chronic Migraine
Duration of Benefit for OnabotulinumtoxinA in Treatment of Chronic Migraine
To obtain a patient specific understanding of response to treatment with onabotulinumtoxinA by collecting and correlating pre and post treatment subject specific history, clinical outcomes, and histological changes.
- Trial name
- NCT02037425
- Testing
- onabotulinumtoxinA
- Where
- United States
- Volunteers
- 44 people
- Sponsor
- Cady, Roger, M.D.
HIV-1
Follow up of Thai Adult Volunteers With Breakthrough HIV Infection After Participation in a Preventive HIV Vaccine Trial
This protocol will study the clinical course of HIV-infection among volunteers who have received either a placebo injection or the experimental vaccine combination of ALVAC-HIV and AIDSVAX B/E prior to HIV-1 infection in…
- Trial name
- NCT00337181
- Where
- Thailand
- Volunteers
- 114 people
- Sponsor
- U.S. Army Medical Research and Development Command
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