Clinical trials: Genetic Information
Type 1 Diabetes Mellitus, Stage 2 Type 1 Diabetes
Information, Follow-up and Early Diagnosis of Children at Risk for Type 1 Diabetes
The aim is to investigate whether screening for islet autoantibodies, regular follow-up, and increased knowledge in families about the progression of the disease in children at high genetic risk or with single or multiple islet…
- Conditions
- Type 1 Diabetes Mellitus, Stage 2 Type 1 Diabetes, Stage 1 Type 1 Diabetes, Stage 3 Type 1 Diabetes
- Trial name
- iT1D (NCT06676566)
- Where
- Sweden
- Volunteers
- 600 people
- Sponsor
- Lund University
Autism, Autism Spectrum Disorder
Autism Genomics Sweden - Genetic Guidance and Information Trial
This observational clinical trial aims to evaluate whether providing genetic information about the origins of autism and related psychiatric disorders enhances understanding, well-being, and empowerment in adolescents and young…
- Conditions
- Autism, Autism Spectrum Disorder, ADHD - Attention Deficit Disorder With Hyperactivity, Depression Anxiety Disorder
- Trial name
- AuGeS-GV (NCT06740760)
- Testing
- Genetic counselling, Leaflet
- Where
- Sweden
- Volunteers
- 63 people
- Sponsor
- Karolinska Institutet
Healthy, Chronic Disease
BioGene Bank Cohort Study for Approved Research Requests
The BioGene bank: Is a centralized collection of human blood samples along with de-identified (coded) health information, environmental factors, family disease histories and information from DNA.
- Trial name
- BGB (NCT02550171)
- Where
- United States
- Volunteers
- 7,056 people, healthy volunteers welcome
- Sponsor
- Northwell Health
Adoption, Genetic Counseling
The Value of Genetic Information to Adult Adopted Individuals
This study will explore adult adoptees' perceptions of the potential value of genetic and family history information. Unlike most people, many adopted individuals do not have access to personal or family medical information…
- Trial name
- NCT00057694
- Where
- United States
- Volunteers
- 40 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Duchenne Muscular Dystrophy
A Study on Safety and Effectiveness of Long-term Treatment With Vamorolone in Boys With Duchenne Muscular Dystrophy
This study aims to assess safety and effectivness of long-term treatment with vamorolone in boys with Duchenne Muscular Dystrophy (DMD) who have completed prior studies with vamorolone.
- Trial name
- GUARDIAN (NCT06713135)
- Testing
- vamorolone 40 mg/mL oral suspension
- Where
- 18 sites in Belgium, Czechia and 7 more
- Volunteers
- 80 people
- Sponsor
- Santhera Pharmaceuticals
Colitis,Ulcerative, Adenomatous Polyposis Coli
Registry With Information About Colitis Ulcerosa and Familial Adenomatous Polyposis Patients
The purpose of this registry is to collect information about patients in which a pouch has been created to improve in the future the quality of the surgery of the pouch.
- Conditions
- Colitis,Ulcerative, Adenomatous Polyposis Coli, Reservoir, Ileoanal
- Trial name
- KOPOF (NCT01604564)
- Where
- Belgium
- Volunteers
- 207 people
- Sponsor
- Universitaire Ziekenhuizen KU Leuven
Dravet Syndrome (DS), Lennox-Gastaut Syndrome (LGS)
A Study to Gather Information About Overall Occurrence and New Cases of Dravet and Lennox-Gastaut Syndromes in Children, Teenagers and Adults in Spain
The main aims of this study are to gather information about how many children, teenagers and adults in Spain have been diagnosed with Dravet syndrome and Lennox-Gastaut syndrome as well as to learn about the number of new Dravet…
- Trial name
- DRALEGA (NCT05982717)
- Testing
- No intervention
- Where
- 4 sites in Spain
- Volunteers
- 237 people
- Sponsor
- Takeda
Infertility
Oocyte Donor Application Discrepancies
Retrospective observational study comparing information received on Inception Central Donor Recruitment's standardized online egg donor application compared to information reported during a Genetic Risk Assessment (GRA)…
- Trial name
- NCT06362551
- Where
- United States
- Volunteers
- 600 people
- Sponsor
- Inception Fertility Research Institute, LLC
Clinical Stage 0 Cutaneous Melanoma AJCC v8, Clinical Stage I Cutaneous Melanoma AJCC v8
A Study on How to Safely Guide Surgery for Melanoma and Similar Skin Tumors in Children Using Pathology and Genetic Information
This phase II trial compares the effect of using risk-based stratification to guide surgical management to the usual approach in treating cutaneous melanoma, atypical Spitz/Spitzoid tumors or other atypical melanocytic tumors…
- Conditions
- Clinical Stage 0 Cutaneous Melanoma AJCC v8, Clinical Stage I Cutaneous Melanoma AJCC v8, Clinical Stage II Cutaneous Melanoma AJCC v8, Cutaneous Melanocytic Neoplasm
- Trial name
- NCT07621614
- Testing
- Biospecimen Collection, Chest Radiography, Computed Tomography
- Where
- 13 sites in United States
- Volunteers
- 51 people
- Sponsor
- Children's Oncology Group
Fabry Disease
Anderson Fabry Disease - the Power of Information.
The goal of this before-after control-impact study is to determine whether providing targeted information on Fabry disease (FD) to cardiologists and tutoring them in the evaluation of patients with unexplained left ventricle…
- Trial name
- NCT07136662
- Testing
- educational
- Where
- Italy
- Volunteers
- 20 people
- Sponsor
- Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Congenital Muscular Dystrophy With ITGA7 (Integrin Alpha-7) Deficiency, Alpha-Dystroglycanopathy (Congenital Muscular Dystrophy and Abnormal Glycosylation of Dystroglycan With Severe Epilepsy)
Congenital Muscle Disease Study of Patient and Family Reported Medical Information
The Congenital Muscle Disease Patient and Proxy Reported Outcome Study (CMDPROS) is a longitudinal 10 year study to identify and trend care parameters, adverse events in the congenital muscle diseases using the Congenital Muscle…
- Conditions
- Congenital Muscular Dystrophy With ITGA7 (Integrin Alpha-7) Deficiency, Alpha-Dystroglycanopathy (Congenital Muscular Dystrophy and Abnormal Glycosylation of Dystroglycan With Severe Epilepsy), Alpha-Dystroglycanopathy (Congenital Muscular Dystrophy With Fatty Liver and Infantile-onset Cataract Caused by TRAPPC11 Mutations), Alpha-Dystroglycanopathy (Congenital Muscular Dystrophy With Hypoglycosylation of Dystroglycan)
- Trial name
- CMDPROS (NCT01403402)
- Where
- United States
- Volunteers
- 4,000 people
- Sponsor
- Cure CMD
Hypertrophic Cardiomyopathy, Hearing Loss
Refining Information Technology Support for Genetics in Medicine
The clinical use of genetic testing is expanding and, as a result, the number of variants identified in patients is growing. Knowledge of the clinical impact of these variants improves over time.
- Conditions
- Hypertrophic Cardiomyopathy, Hearing Loss, Cancer
- Trial name
- RISGIM (NCT01225978)
- Testing
- GeneInsight Clinic (GIC)
- Where
- 9 sites in United States, Canada
- Volunteers
- 40 people, healthy volunteers welcome
- Sponsor
- Brigham and Women's Hospital
Hemophilia A
A Post Approval Commitment Study to Gain More Information on How Safe and Effective KOVALTRY is in Chinese Children, Adolescents /Adults With Severe Hemophilia A
The goal of this study is to gather more information on safety and efficacy of Kovaltry for the prevention and treatment of bleeds in Chinese children, adolescents/adults with severe hemophilia A.
- Trial name
- NCT04565236
- Testing
- Recombinant Factor VIII (Kovaltry, BAY81-8973) Treatment Group 1, Recombinant Factor VIII (Kovaltry, BAY81-8973) Treatment Group 2, Recombinant Factor VIII (Kovaltry, BAY81-8973) Treatment Group 3
- Where
- 10 sites in China
- Volunteers
- 45 people
- Sponsor
- Bayer
Mental Health, Child Wellbeing
Generation Victoria Cohort 2020s: A Statewide Longitudinal Cohort Study of Victorian Children and Their Parents
Generation Victoria (GenV) is a longitudinal, population-based study of Victorian children and their parents that will bring together data on a wide range of conditions ,exposures and outcomes.
- Conditions
- Mental Health, Child Wellbeing, Infant Health, Child Health
- Trial name
- GenV (NCT05394363)
- Where
- Australia
- Volunteers
- 150,000 people, healthy volunteers welcome
- Sponsor
- Murdoch Childrens Research Institute
Urea Cycle Disorder
Observational Study That Will Collect Information on Patients With Urea Cycle Disorders (UCDs)
THRIVE is an observational study that will collect information on patients with UCDs. THRIVE will follow enrolled participants for up to 10 years.
- Trial name
- THRIVE (NCT01948427)
- Where
- United States
- Volunteers
- 203 people
- Sponsor
- Amgen
Sickle Cell Disease
Development and Evaluation of an Information Management System and Communication System for Population-wide Point-of-care Infant Sickle Cell Disease Screening
Although over 75% of children with sickle cell disease (SCD) are born in sub-Sahara where the disease highly contributes to under-5 mortality and causes life-long debilitation, evidence-based strategies to control SCD are not…
- Trial name
- SIMCS SCD (NCT06563440)
- Testing
- Digital app and information system
- Where
- 2 sites in United States, Uganda
- Volunteers
- 24,000 people, healthy volunteers welcome
- Sponsor
- Makerere University
Medication Adherence, Cystic Fibrosis
Interactive Mobile Health Information to Enhance Patient Care at a Cystic Fibrosis Center
Real-world adherence to inhaled and oral therapies for cystic fibrosis (CF) patients remains discouragingly low, ranging between 31-53% for inhaled antibiotics and 41-72% for hypertonic saline.
- Trial name
- MOMMI3CFCM (NCT03052231)
- Testing
- caremessage
- Where
- United States
- Volunteers
- 80 people, healthy volunteers welcome
- Sponsor
- Landon Pediatric Foundation
Short Stature, Growth Hormone Treatment
Web-based Adherence Information Integrated Nurse-led Monitoring Clinic
Non-adherence is a recognized problem with growth hormone treatment in children. In this study, we aim to utilize web-based information derived from easypod growth hormone injection devices and easypod connect devices in a…
- Trial name
- WAIN-MC (NCT04244123)
- Testing
- integrated information and nurse led telephone clinic
- Where
- United Kingdom
- Volunteers
- 43 people
- Sponsor
- Manchester University NHS Foundation Trust
Colorectal Cancer, Hereditary Non-polyposis Colon Cancer
Collecting Information From Patients and Family Members With Hereditary Colorectal Cancer Syndromes or Who Are at High Risk of Developing Colorectal Cancer
RATIONALE: Gathering medical and family history information from patients and family members may help doctors better understand hereditary colorectal cancer and hereditary polyposis syndrome and identify patients at high risk of…
- Conditions
- Colorectal Cancer, Hereditary Non-polyposis Colon Cancer, Precancerous Condition
- Trial name
- NCT00675636
- Testing
- study of socioeconomic and demographic variables, evaluation of cancer risk factors, study of high risk factors
- Where
- 3 sites in United States
- Volunteers
- 730 people
- Sponsor
- Vanderbilt University Medical Center
Acne Vulgaris
Phase IV Study to Gather More Information About the Safety of ACZONE Gel, 5% in Treating Subjects With Acne Who Have G6PD Deficiency
The purpose of this study is to gather more information about the safety of ACZONE Gel, 5% in treating subjects with acne who have certain blood disorders.
- Trial name
- NCT00243542
- Testing
- ACZONE Gel, 5%, Vehicle
- Where
- 29 sites in United States
- Volunteers
- 64 people
- Sponsor
- Allergan