Clinical trials: Patient Reported Outcome
Lower Lip Tissue Loss, Cancer
Functional and Aesthetic Outcomes Following Lower Lip Reconstruction
This retrospective study, aims to evaluate the functional and aesthetic results of lower lip reconstructions, incorporating both patient experiences and the analysis of physicians and surgeons working on facial issues (plastic…
- Trial name
- REFEPLI (NCT07298070)
- Testing
- Patient-Reported Outcome Questionnaire (post-operative)
- Where
- France
- Volunteers
- 20 people
- Sponsor
- Hôpital NOVO
Head and Neck Carcinoma
Feasibility of VMAT and CBCT for Head and Neck Carcinomas
This will be a prospective longitudinal study describing clinical throughput metrics and patient reported quality of life outcome measures for patients undergoing Volumetric modulated arc therapy (VMAT) with and without Cone-beam…
- Trial name
- NCT01384890
- Testing
- VMAT with CBCT, VMAT with kV-ray
- Where
- Canada
- Volunteers
- 20 people
- Sponsor
- British Columbia Cancer Agency
Narcolepsy, Obstructive Sleep Apnea
Development and Validation of Pediatric Narcolepsy Patient Reported Outcomes Scale
The purpose of this study is to test a pediatric narcolepsy patient reported outcomes tool to assess pediatric narcolepsy symptoms and their effect on daily functioning and quality of life.
- Trial name
- PN-PROS (NCT05373979)
- Where
- United States
- Volunteers
- 212 people
- Sponsor
- Boston Children's Hospital
Bardet Biedl Syndrome (BBS), Bardet Biedl Syndrome
Real-World Effects of MC4R Agonist Therapy in BBS and Severe Genetic Obesity
Bardet-Biedl syndrome (BBS) and other rare disorders associated with impairment of the melanocortin-4 receptor (MC4R) pathway are characterized by severe early-onset obesity, hyperphagia, and substantial morbidity.
- Conditions
- Bardet Biedl Syndrome (BBS), Bardet Biedl Syndrome, Bardet-Biedl Syndrome (BBS), Alstrom Syndrome
- Trial name
- REAL-MC4 (NCT07674290)
- Testing
- Setmelanotide
- Where
- Germany
- Volunteers
- 200 people
- Sponsor
- Tom Hühne
Cancer Predisposition Syndromes, Pediatric Cancer
Questionnaire on Congenital Cancer Signs Through Self-Assessment
This clinical trial tests whether a patient- and caregiver-completed questionnaire (QUOCCAS) can accurately help identify children and adolescents with cancer who may have an underlying cancer predisposition syndrome (CPS).
- Conditions
- Cancer Predisposition Syndromes, Pediatric Cancer, Childhood Neoplasms, Hereditary Cancer Syndromes
- Trial name
- QUOCCAS (NCT07378423)
- Testing
- Pre-Visit Preparation (PVP) Brochure, QUOCCAS Questionnaire, Germline genetic sequencing for Cancer Predisposition Syndromes (CPS)
- Where
- Switzerland
- Volunteers
- 205 people
- Sponsor
- Insel Gruppe AG, University Hospital Bern
Anterior Cruciate Ligament Rupture
The Clinical Outcome of Anterior Cruciate Ligament Reconstruction
Retrospective cohort study. The investigators evaluated the early, middle and long term effects of different surgical methods of anterior cruciate ligament reconstruction on knee function.
- Trial name
- RCACLR (NCT03984474)
- Where
- China
- Volunteers
- 100 people
- Sponsor
- Peking University Third Hospital
Family Members, Cancer
Evaluation of FROM-16 in ATMP Patients & Families
Poor health, and its treatment, has impact beyond the healthcare system into wider society. A person's productivity, taxable earnings, benefit payments and community contribution may all be adversely affected by poor health.
- Trial name
- NCT05141318
- Testing
- FROM-16 Questionnaire, Semi-structured two-part interview
- Where
- 5 sites in United Kingdom
- Volunteers
- 18 people, healthy volunteers welcome
- Sponsor
- Swansea University
Spina Bifida or Spinal Dysraphism
Adult Bladder and Quality of Life Evaluation in Spina Bifida
Spina bifida (SB) is a birth defect that affects the spine, often causing paralysis in the legs and problems with bladder and bowel control.
- Trial name
- ABLE-SB (NCT07642466)
- Where
- Canada
- Volunteers
- 300 people
- Sponsor
- Blayne Welk
COPD
Real-World Treatment Patterns and Patient Reported Outcome in COPD (REMIND)
This retrospective observational study aims to report distribution of the proportion of symptomatic Chronic obstructive pulmonary disease (COPD) patients classified by the COPD Assessment Test (CAT) managed with single or dual…
- Trial name
- REMIND (NCT05903989)
- Where
- Japan
- Volunteers
- 708 people
- Sponsor
- AstraZeneca
Monteggia's Fracture
Monteggia Fractures: Analysis of Patient Reported Outcome Measurements in Correlation to Ulnar Fracture Localization
Patients who had suffered a Monteggia fracture (lesion of the elbow) will be assessed regarding clinical and functional outcome (PROM) after treatment with osteosynthesis.
- Trial name
- NCT05325268
- Testing
- Osteosynthesis
- Where
- Germany
- Volunteers
- 35 people
- Sponsor
- Technische Universität Dresden
Survivorship, Cancer
Patient-Reported Outcome Version of the Common Criteria for Adverse Events
Childhood cancer survivors are vulnerable to treatment-related late effects, including physical and psychosocial morbidities, subsequent malignancies, and premature death.
- Trial name
- NCT04050072
- Testing
- Childhood Cancer Survivors (CCSS), SJLIFE, Community non-cancer control
- Where
- United States
- Volunteers
- 837 people, healthy volunteers welcome
- Sponsor
- St. Jude Children's Research Hospital
Lung Transplantation
Patient Reported Outcomes in Living Donor Lung Transplantation
The purpose of the present study is to investigate how the health of donors in living donor lung transplantation will change after transplant operations.
- Trial name
- NCT00905697
- Testing
- Living donor lung transplantation
- Where
- Japan
- Volunteers
- 40 people
- Sponsor
- Kyoto University, Graduate School of Medicine
Hemophilia A
Patient Functioning and Well-being, Economic, and Clinical Impact of Hemophilia A and Its Treatment
The purpose of the study is to improve the understanding of key patient reported outcomes such as quality of life as well as clinical outcomes in hemophilia A, in a global real world setting.
- Trial name
- ECHO (NCT02396862)
- Testing
- Available Recombinant, and Human Factor VIII products incl. Kogenate FS (Recombinant Factor VIII, BAY14-2222)
- Where
- 10 sites in United States, Japan and 2 more
- Volunteers
- 272 people
- Sponsor
- Bayer
Arthroplasty, Replacement, Knee
The Association of Gait Kinematics, Instability and Patient Reported Outcomes in Patients With Total Knee Replacement
It is unclear why 20% of patients with total knee replacements (TKR) are dissatisfied. Few studies have specifically assessed the way people walk ('gait') with an 'unhappy' or unstable knee or following re-do ('revision') TKR…
- Trial name
- NCT03896191
- Testing
- Revision TKR surgery, No intervention.
- Where
- United Kingdom
- Volunteers
- 38 people, healthy volunteers welcome
- Sponsor
- University of Bath
Adolescence Idiopathic Scoliosis, Preoperative Anxiety
the Effect of the Preoperative Information Method on Intraoperative Anxiety and Postoperative Outcomes in AIS Patients: a Randomized Clinical Trial
Due to the increasing use of smartphones and social media in contemporary times, adolescents experience a rapid loss of attention while reading or listening.
- Conditions
- Adolescence Idiopathic Scoliosis, Preoperative Anxiety, Postoperative Pain After Spinal Surgery
- Trial name
- NCT07902674
- Testing
- İntervention 1: Video-Based Preoperative Education, İntervention 2: Brochure-Based Preoperative Education, Routine Verbal Preoperative Counseling
- Where
- Turkey (Türkiye)
- Volunteers
- 42 people
- Sponsor
- Gazi University
Ankle Injuries, Syndesmotic Injuries
Grappler Interference Screw Post-Market Collection of Patient Reported Outcome Measures
Ambispective, multi-surgeon, single site, consecutive case series to determine the safety, performance, and benefits of the Grappler(R) Interference Screw.
- Conditions
- Ankle Injuries, Syndesmotic Injuries, Ankle Inversion Sprain, Deltoid Ankle Sprain
- Trial name
- NCT05190874
- Testing
- Grappler Interference Screw System
- Where
- United States
- Volunteers
- 19 people
- Sponsor
- Paragon 28
Intensive Care Unit Syndrome, Patient Engagement
Improving Shared-Decision Making in the Intensive Care Unit Using Patient-reported Outcome Information
The aim of this study is to evaluate the effect of incorporation of outcome information in the Intensive Care Unit (ICU) decision-making process on patient and family reported outcomes and experiences of patients, relatives and…
- Trial name
- NCT05155150
- Testing
- Providing patient-reported outcome
- Where
- 2 sites in Netherlands
- Volunteers
- 160 people
- Sponsor
- Radboud University Medical Center
Eosinophilic Gastrointestinal Disorders (EGIDs), Eosinophilic Esophagitis
OMEGA: Outcome Measures in Eosinophilic Gastrointestinal Disorders Across the Ages
The purpose of this observational study is to find the best measures to define how well a person with eosinophilic disorder is doing.
- Conditions
- Eosinophilic Gastrointestinal Disorders (EGIDs), Eosinophilic Esophagitis, Eosinophilic Gastritis, Eosinophilic Gastroenteritis
- Trial name
- OMEGA (NCT02523118)
- Where
- 19 sites in United States
- Volunteers
- 1,350 people
- Sponsor
- Children's Hospital Medical Center, Cincinnati
Friedreich's Ataxia
Patient Reported Outcomes in Friedreich's Ataxia Patients After Withdrawal From Treatment With Idebenone (PROTI)
This is a Phase IIIb Double-Blind, Randomised, Placebo-Controlled Study. The aim is to further investigate the effects of idebenone in patients with Friedreich's ataxia.
- Trial name
- PROTI (NCT01303406)
- Testing
- Idebenone
- Where
- 6 sites in Austria, Germany and 2 more
- Volunteers
- 29 people
- Sponsor
- Santhera Pharmaceuticals
Parkinson Disease
Assessing Tele-Health Outcomes in Multiyear Extensions of PD Trials
An observational study to characterize and compare long-term clinical outcomes data collected remotely through periodic tele-visits, interactive smartphone app sessions, and web-based surveys in individuals with Parkinson's…
- Trial name
- AT-HOME PD (NCT03538262)
- Where
- United States
- Volunteers
- 226 people
- Sponsor
- Massachusetts General Hospital