Clinical trials: Familial Pulmonary Fibrosis
Cystic Fibrosis
Investigating the Use of a Positive Parenting Programme to Improve Treatment Adherence in Cystic Fibrosis
Cystic fibrosis (CF) is an illness that makes the lungs clog up with sticky mucus. There is no cure and so treatments are used to help make the illness easier to live with.
- Trial name
- NCT02501369
- Testing
- Self-directed Teen Triple P
- Volunteers
- 6 people, healthy volunteers welcome
- Sponsor
- Emma Wells
Alpha-Thalassemia, Beta-Thalassemia
FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases
FLOWER is a completely virtual, nationwide, real-world observational study to collect, annotate, standardize, and report clinical data for rare diseases.
- Conditions
- Alpha-Thalassemia, Beta-Thalassemia, Amyloidosis, Amyotrophic Lateral Sclerosis
- Trial name
- NCT06539169
- Where
- United States
- Volunteers
- 1,000 people
- Sponsor
- xCures
Idiopathic Pulmonary Fibrosis, Familial Pulmonary Fibrosis
Role of Genetics in Idiopathic Pulmonary Fibrosis (IPF)
The purpose of this study is to investigate inherited genetic factors that play a role in the development of familial pulmonary fibrosis and to identify a group of genes that predispose individuals to develop pulmonary fibrosis.
- Conditions
- Idiopathic Pulmonary Fibrosis, Familial Pulmonary Fibrosis, Idiopathic Interstitial Pneumonia, Familial Interstitial Pneumonia
- Trial name
- GWAS (NCT01088217)
- Where
- 4 sites in United States, Iceland
- Volunteers
- 8,000 people
- Sponsor
- National Jewish Health
Intrahepatic Cholangiocarcinoma (Icc)
A Study on Intratumoral Fibrosis and α-SMA Expression in Intrahepatic Cholangiocarcinoma
The aim of this observational study was to understand the prognostic imaging of the degree of intratumoral fibrosis and intratumoral α-SMA levels in patients with intrahepatic cholangiocarcinoma (ICC).
- Trial name
- NCT07479264
- Testing
- No Interventions
- Where
- China
- Volunteers
- 169 people
- Sponsor
- First Affiliated Hospital, Sun Yat-Sen University
Congenital Adrenal Hyperplasia, Familial Hyperinsulinemic Hypoglycemia 1
Baby Detect : Genomic Newborn Screening
Newborn screening (NBS) is a global initiative of systematic testing at birth to identify babies with pre-defined severe but treatable conditions.
- Conditions
- Congenital Adrenal Hyperplasia, Familial Hyperinsulinemic Hypoglycemia 1, Phosphoglucomutase 1 Deficiency, Maturity Onset Diabetes of the Young
- Trial name
- BabyDetect (NCT05687474)
- Where
- Belgium
- Volunteers
- 6,824 people, healthy volunteers welcome
- Sponsor
- Centre Hospitalier Universitaire de Liege
Type 1 Diabetes, Allergic Rhinitis
Intervention in Chronic Pediatric Patients and Their Families.
This project consists of a psychological intervention in patients and their families with different chronic diseases in order to carry out a comparative study between medical pathologies to know which are the protective or risk…
- Conditions
- Type 1 Diabetes, Allergic Rhinitis, Allergic Asthma, Asthma
- Trial name
- FACTORADAPT (NCT04476433)
- Testing
- Ten Vida (10Vida)
- Where
- Spain
- Volunteers
- 500 people, healthy volunteers welcome
- Sponsor
- University of Valencia
Spinal Muscular Atrophy, Fragile X Syndrome
Early Check: Expanded Screening in Newborns
Early Check provides voluntary screening of newborns for a selected panel of conditions. The study has three main objectives: 1) develop and implement an approach to identify affected infants, 2) address the impact on infants and…
- Conditions
- Spinal Muscular Atrophy, Fragile X Syndrome, Fragile X - Premutation, Duchenne Muscular Dystrophy
- Trial name
- NCT03655223
- Testing
- Confirmatory Testing
- Where
- United States
- Volunteers
- 30,000 people, healthy volunteers welcome
- Sponsor
- RTI International
Cystic Fibrosis
Effect of a Family Empowerment Program on Coping, Problem Solving in Parents, and Quality of Life in Children With Cystic Fibrosis
Parents of children with cystic fibrosis (CF) experience high levels of stress and problems. Family empowerment interventions provide important support for many patients with CF and their families.
- Trial name
- NCT03800459
- Testing
- family empowerment program
- Where
- Turkey (Türkiye)
- Volunteers
- 48 people, healthy volunteers welcome
- Sponsor
- Selcuk University
Telomere Biology Disorders, Dyskeratosis Congenita
Nucleoside Therapy in Patients With Telomere Biology Disorders
The goal of this clinical trial is to learn if a combination therapy of deoxycytidine (dC) plus deoxythymidine (dT) is safe in patients with telomere biology disorders.
- Conditions
- Telomere Biology Disorders, Dyskeratosis Congenita, Revesz Syndrome, Hoyeraal Hreidarsson Syndrome
- Trial name
- NCT06817590
- Testing
- deoxycytidine, deoxythymidine
- Where
- United States
- Volunteers
- 36 people
- Sponsor
- Suneet Agarwal
Pseudomonas Aeruginosa, Cystic Fibrosis
The Carrier Rates of Pseudomonas Aeruginosa in Family Members of Children With Cystic Fibrosis
Pseudomonas aeruginosa (Pa) is the bacterium that causes one of the most consequential lung infections in people with CF. Many young children do not have Pa in their lungs but will become infected as they get older.
- Trial name
- NCT01616862
- Where
- United States
- Volunteers
- 53 people
- Sponsor
- Zafer Soultan
Cystic Fibrosis in Children
The Effect of Telenursing on Self-efficacy and Treatment Adherence in Children With Cystic Fibrosis
The goal of this clinical trial is to learn if a telenursing-based programs works to increase self-efficacy and treatment adherence in children with Cystic fibrosis disease.
- Trial name
- NCT06660745
- Testing
- telenursing-based family empowerment program
- Where
- Iran
- Volunteers
- 50 people
- Sponsor
- Shahid Beheshti University of Medical Sciences