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Genetic Disorder clinical trials

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NCT ID: NCT06362473 Recruiting - Clinical trials for Familial Hypercholesterolemia

Lipid Transport Disorder Italian Genetic Record (LIPIGEN)

LIPIGEN
Start date: August 4, 2015
Phase:
Study type: Observational [Patient Registry]

LIPIGEN is an observational study involving Italian physicians and researchers in the field of diseases related to blood lipid levels. This study aims to improve the diagnosis and treatment of people with familial dyslipidaemias, including very common conditions such as familial hypercholesterolaemia (FH) and less common ones such as familial chylomicronidaemic syndrome (FCS). What does the study do? It collects information on Italian patients with Familial Hypercholesterolaemia (FH), following them in their normal clinical examination without adding extra procedures. It uses the data collected to further our understanding of diseases such as familial hypercholesterolaemia, examining how it is diagnosed clinically and by genetic testing, and evaluating the effectiveness of different treatments. It seeks to identify the genetic mutations that cause familial hypercholesterolaemia and other dyslipidaemias, helping to choose the most effective treatments. It evaluates the impact of long-term treatments and patient adherence to medication, as well as monitoring the incidence of cardiovascular events and other important outcomes. Who can participate? The study is aimed at people of all ages, from children to adults, with familial hypercholesterolaemia or other genetic dyslipidaemia. More than 50 centres throughout Italy are involved, making the study accessible to many. What does participation entail? Participants will continue with their normal clinical practice. Data such as family history, personal clinical findings and genetic information will be collected, without additional procedures. For some, further evaluations, such as ultrasounds, may be required to better study their condition. The LIPIGEN study not only helps to better understand diseases related to high cholesterol but also aims to improve patients' lives through more precise diagnosis and personalised treatments.

NCT ID: NCT06144957 Recruiting - Epilepsy Clinical Trials

SLC13A5 Deficiency Natural History Study - United States Only

Start date: December 1, 2021
Phase:
Study type: Observational

SLC13A5 deficiency (Citrate Transporter Disorder, EIEE 25) is a rare genetic disorder with neurodevelopmental delays and seizure onset in the first few days of life. This natural history study is designed to address the lack of understanding of disease progression. Additionally it will identify clinical and biomarker endpoints for use in future clinical trials.

NCT ID: NCT05737602 Recruiting - Genetic Disorder Clinical Trials

Promoting Stress Management and Resilience Among Individuals With Von Hippel- Lindau Disease

Start date: July 1, 2024
Phase: N/A
Study type: Interventional

The Relaxation Response Resiliency Program (3RP) has shown efficacy in improving coping and resilience across diverse populations; however, little is known about how it helps individuals manage the challenges of living with a chronic illness. This study proposes to pilot test an adapted version of the 3RP among patients living with VHL.

NCT ID: NCT05212428 Recruiting - Genetic Disorder Clinical Trials

DNA Sequencing in Clinical Practice, Mayo Clinic Health Tapestry Study

Start date: January 22, 2020
Phase: N/A
Study type: Interventional

This clinical trial collects information on how sequencing a patient's deoxyribonucleic acid (DNA) (i.e., the genetic material) could impact their health care. This study also develops and improves ways to include genomic information from DNA sequencing into the electronic health record to create a more complete "Health Tapestry" for each participant. Sequencing of a patient's DNA leads to the detection of genetic variants some of which determine risk for disease development. Discovery of those genetic variants in a patient could result in prevention, earlier diagnosis or better therapy of disease.

NCT ID: NCT04743466 Recruiting - Depression Clinical Trials

Evaluation of Association Between Testosterone Levels, Dementia, and Adverse Mental Health Outcomes

Start date: February 13, 2020
Phase:
Study type: Observational

This study evaluates the association between testosterone levels and risk of dementia and adverse mental health outcomes (e.g. depression and anxiety). It is not known whether low testosterone levels may be associated with an increased risk of dementia. Learning about the association between testosterone levels and risk of dementia may help determine the long-term effects of androgen deprivation therapy and may help improve quality of life.

NCT ID: NCT04681781 Enrolling by invitation - Epilepsy Clinical Trials

SLC13A5 Deficiency Natural History Study - Remote Only

Start date: March 1, 2021
Phase:
Study type: Observational

SLC13A5 deficiency (Citrate Transporter Disorder, EIEE 25) is a rare genetic disorder with neurodevelopmental delays and seizure onset in the first few days of life. This natural history study is designed to address the lack of understanding of disease progression and genotype-phenotype correlation. Additionally it will help in identifying clinical endpoints for use in future clinical trials.

NCT ID: NCT03589079 Recruiting - Genetic Disorder Clinical Trials

Delineation of Novel Monogenic Disorders in the United Arab Emirates Population

Start date: January 1, 2018
Phase:
Study type: Observational

The study aims to identify novel monogenic phenotypes from specific pedigrees and discover the underlying causal genetic variant using genetic sequencing (Sanger and/or Next Generation Sequencing - Panel/WES/WGS) methodologies in families across the United Arab Emirates (UAE).

NCT ID: NCT03435627 Completed - Genetic Disorder Clinical Trials

Post Marketing Surveillance on Long-term Use With Norditropin® (Short Stature Due to Noonan Syndrome)

Start date: February 26, 2018
Phase:
Study type: Observational

The purpose of this study is to collect information about safety and effectiveness for long term use of Norditropin®. Participants will attend the medical institution according to usual practice and receive medical care, as agreed with the study doctor.

NCT ID: NCT03093220 Recruiting - Genetic Disorder Clinical Trials

Molecular Typing of Community-acquired Pneumonia Based on Multiple-omic Data Analysis

Start date: March 2017
Phase: N/A
Study type: Observational

Community-acquired pneumonia (CAP) is a heterogeneous disease causing great morbidity, mortality and health care burden globally. Typing methods for discriminating different clinical conditions of the same disease are essential to a better management of CAP. Traditional typing systems based separately on clinical manifestations (such as PSI and CURB-65), pathogens(bacterial types, virulence, drug resistance, etc) or host immune state (immunocompetent, immunocompromised or immunodeficiency). Thus, they are barely able to represent the real disease status nor to precisely predict the mortality. As the development of multi-omic technologies, the relatedness of different phenotypes at a molecular level have revolutionized our ability to differentiate among patients. Our study is aimed at establishing a novel molecular typing method of CAP. Multi-omic (including genomics, transcriptomes, and metabolisms) data obtained from enrolled CAP patients and isolated pathogens would be integrated analyzed and interpreted. Tthe investigators believe that an appropriate molecular typing method would lead to revolutionary changes in current arrangements of CAP.

NCT ID: NCT03065114 Completed - Fertility Disorders Clinical Trials

Retrospective Study on Clinical Results of Preimplantation Genetic Screening at Different Embryo Stage

Start date: December 1, 2014
Phase: N/A
Study type: Observational

Preimplantational genetic screen (PGS) is tool for diagnosis of embryo chromosome abnormality before transfer. Under this tool, patients with a family history of genetic disease or special genetic disease could avoid to produce chromosomal abnormalities of the next pregnant. This study is a retrospective study, data collection from 2001 Jan. to 2015. Nov. Patients underwent PGS and data including the couples age, infertility factors, stimulation protocols, medicine records, embryo quality records and blood tests were collected in this study. Analysis the relationship between outcomes of PGS, clinical outcomes and embryo quality is performed and further to find a diagnosis reference for clinical care.