Clinical trials: Patient Reported Outcome Measurements
CNS Tumor, Childhood
Patient Reported Outcome Measurement Within the Secured Access to Innovative Medicines for Children With cAncer (SACHA) Study
Patient-Reported Outcomes (PROs) are patient-centered measures used to assess health status, track changes over time, and evaluate the impact of treatment on the patient's perceived health.
- Trial name
- PRO-SACHA (NCT07738601)
- Testing
- SSPedi - Symptom Screening in Pediatrics Questionnaire
- Where
- France
- Volunteers
- 72 people
- Sponsor
- Assistance Publique Hopitaux De Marseille
Breast Cancer, Patient Reported Outcomes
Breast Cancer Patient Engagement With Patient Reported Outcome Measure Survey
The purpose of this research protocol is to measure Patient Reported Outcome Measures (PROMs) in breast cancer patients. PROM results will be provided to patients and providers and the investigators will evaluate the relationship…
- Trial name
- NCT03995082
- Testing
- Patient Reported Outcome Measure Survey result feedback
- Where
- 3 sites in United States
- Volunteers
- 925 people
- Sponsor
- University of Colorado, Denver
Quality of Life (QOL), Patient-Reported Outcome Measures (PROMs)
Validation of the EQ-5D-Y-3L and EQ-5D-Y-5L for Paediatric Patients in China
The goal of this observational study is to validate the EQ-5D-Y-3L and EQ-5D-Y-5L in measuring health-related quality of life (HRQoL) for paediatric patients with different health conditions in China.
- Conditions
- Quality of Life (QOL), Patient-Reported Outcome Measures (PROMs), Pneumonia Childhood, Neuroblastoma (NB)
- Trial name
- NCT06873672
- Where
- China
- Volunteers
- 360 people
- Sponsor
- RenJi Hospital
Leukemia, Childhood, Solid Tumor, Childhood
Observational MyPal-Child Study on the ePRO-based Early Palliative Care Digital System in Paediatric Oncology Patients
The main aim of the study is the evaluation of the feasibility of comprehensive service which has been developed while considering patient-orientated needs.
- Trial name
- MyPal4Kids (NCT04381221)
- Where
- 3 sites in Czechia, Germany
- Volunteers
- 100 people
- Sponsor
- Centre for Research and Technology Hellas
Velopharyngeal Insufficiency in Children With Isolated or Combined Cleft Palate
Prospective Evaluation of Speech Function Through Patient- and Parent-response Outcome Measurements in Velopharyngeal Insufficiency
Cleft lip and/or palate (CL/P) is the most common congenital malformation, with about one in 500 children born with CL/P in Sweden, corresponding to approximately 175 births annually.
- Trial name
- NCT05838261
- Testing
- Pharyngeal flap
- Where
- 6 sites in Sweden
- Volunteers
- 50 people
- Sponsor
- Umeå University
Pediatric Asthma
Association Between Activity and PROMIS Pediatric Measures in Children With Asthma
Aim: Determine the association between activity (steps taken) and PROMIS Pediatric measures in order to explore the use of pedometry data to augment PROs in research and clinical care.
- Trial name
- NCT03933540
- Where
- 2 sites in United States
- Volunteers
- 105 people
- Sponsor
- Duke University
Cystinosis
Development of Health-related Quality of Life Instrument for Patients With Cystinosis
Cystinosis is a rare congenital, inherited metabolic disorder that results in the storage of cystine in the cells of many organs of the body.
- Trial name
- QUALIFY (NCT05959668)
- Where
- Germany
- Volunteers
- 300 people
- Sponsor
- Cystinose Stiftung
Inborn Errors of Metabolism, Urea Cycle Disorder
Patient and Observer Reported Outcome Measurements in Inborn Errors of Metabolism
lnborn errors of metabolism (IEM) are a heterogeneous group of rare, sometimes debilitating or even fatal diseases . In IEM, both definition and assessment of meaningful outcome parameters is often extremely difficult resulting…
- Conditions
- Inborn Errors of Metabolism, Urea Cycle Disorder, Maple Syrup Urine Disease, Phenylketonurias
- Trial name
- MetaPROM (NCT04248062)
- Testing
- Survey
- Where
- Switzerland
- Volunteers
- 69 people
- Sponsor
- University Children's Hospital, Zurich
Asthma, Severe Asthma
National Validation and Sensitivity to Change of the SAQ
DESIGN A multi-centre mixed methods study of a new asthma specific quality of life questionnaire including limited clinic data. AIMS To collect further quantitative data to validate a new asthma quality of life scale, the Severe…
- Trial name
- NCT04031261
- Where
- 5 sites in United Kingdom
- Volunteers
- 410 people
- Sponsor
- University Hospital Plymouth NHS Trust
Cystic Fibrosis
Development and Validation of a Disease Specific PROM to Assess Abdominal Involvement in Patients With CF (CFAbd-Score)
Development, validation and evaluation of a new multimodal questionnaire to assess and quantify the abdominal involvement in patients with the inherited life shortening multi-organ disease Cystic fibrosis.
- Trial name
- CFAbd-Score (NCT03052283)
- Testing
- Questionnaire Patient Reported Outcome Measure (PROM)
- Where
- 2 sites in Germany
- Volunteers
- 2,000 people, healthy volunteers welcome
- Sponsor
- Medizinische Hochschule Brandenburg Theodor Fontane
Superficial Venous Insufficiency, Quality of Life
Validation of Swedish Short PROM för Venous Insufficiency
Validation of a new short Swedish patient reported outcome measure for superficial venous insufficiency. Analysis of its capacity to measure quality of life and its responsiveness to change caused by treatment.
- Conditions
- Superficial Venous Insufficiency, Quality of Life, Change After Treatment
- Trial name
- NCT04304937
- Testing
- patient reported outcome measure
- Where
- 3 sites in Sweden
- Volunteers
- 257 people
- Sponsor
- Karolinska Institutet
Cystic Fibrosis, Digestive System Disease
A Comprehensive Approach To Relief Of Digestive Symptoms In Cystic Fibrosis: CARDS-CF
Development of a new patient reported outcome measure (PROM) that will measure the daily burden of gastrointestinal symptoms over the previous 24 hour period for people with cystic fibrosis.
- Conditions
- Cystic Fibrosis, Digestive System Disease, Genetic Disease, Respiratory Tract Diseases
- Trial name
- CARDS-CF (NCT05251467)
- Testing
- Focus group, Patient interview (n = approximately 10), Questionnaire (n = 180)
- Where
- United Kingdom
- Volunteers
- 350 people
- Sponsor
- Nottingham University Hospitals NHS Trust
Asthma in Children
Personalised Outcomes in Children With Recurrent Wheeze
This project aims to develop a PROM for preschool children with recurrent wheeze. Nearly one third of children will have at least one episode of wheeze in the first five years of life.
- Trial name
- NCT03858010
- Testing
- Wheeze and me questionnaire
- Where
- United Kingdom
- Volunteers
- 500 people, healthy volunteers welcome
- Sponsor
- Imperial College Healthcare NHS Trust
Total Knee Replacement
Qualitative Interviews With Healthcare Professionals
PLANNING PHASE- Qualitative interviews with Healthcare Professionals to assist in the development of a new Patient Reported Outcome Measure (PROM) to assess patient's emotional wellbeing, and perceptions of Total Knee Replacement…
- Trial name
- NCT05597046
- Testing
- Interview
- Where
- United States
- Volunteers
- 6 people
- Sponsor
- Invibio Ltd
Charcot Marie Tooth Disease, Inherited Peripheral Neuropathy
Disability Severity Scale (DSI) and Hereditary Motor and Sensory Neuropathy Overall Disability Scale (HMSN-R-ODS)
The purpose of this research study is to create and validate two patient reported outcome (PRO) questionnaires. PRO questionnaires ask questions that help to measure disability in patients with inherited neuropathies.
- Trial name
- DSI and HMSN (NCT02194010)
- Where
- 3 sites in United States, United Kingdom
- Volunteers
- 563 people
- Sponsor
- University of Iowa
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
Hallux Valgus Deformity, Hallux Valgus (Bunion) Resection
Fourth Generation Percutaneous Transverse Osteotomies for Hallux Valgus
The goal of this observational study is to learn if percutaneous transverse osteotomies for hallux valgus deformity are safe and effective. The main questions it aims to answer are: 1.
- Conditions
- Hallux Valgus Deformity, Hallux Valgus (Bunion) Resection, Hallux Valgus Surgery, Hallux Deformity
- Trial name
- NCT06625229
- Where
- Australia
- Volunteers
- 483 people
- Sponsor
- Orthopaedic and Arthritis Specialist Centre
Rheumatic Diseases, Rheumatic Disorder
Exploring and Measuring the Impact of Steroids in Children and Young People
Assessing the impact of glucocorticoids in children and young people with rheumatic conditions, to develop a patient reported outcome measure (PROM).
- Conditions
- Rheumatic Diseases, Rheumatic Disorder, Rheumatologic Conditions (JRA,Lupus)
- Trial name
- NCT07350395
- Where
- 3 sites in United Kingdom
- Volunteers
- 70 people
- Sponsor
- University of the West of England
Oncology, Quality of Life
Measuring Health Related Quality of Life in AYAs
AIM1a: AYAs with cancer experience many challenges that impact their health-related quality of life (HRQOL) but few measures adequately capture AYAs' HRQOL in valid and reliable ways.
- Trial name
- PROMIS AYA (NCT03482778)
- Where
- 3 sites in United States
- Volunteers
- 165 people
- Sponsor
- Wake Forest University Health Sciences
Liver Transplant; Complications, Quality of Life
Starzl Network Patient Reported Outcomes
This study uses a smartphone application/web interface (RealTime Clinic; RTC) to collect patient and parent reports of a pediatric liver transplant recipient's quality of life (QOL), and examines the extent to which QOL…
- Conditions
- Liver Transplant; Complications, Quality of Life, Child Behavior, Adolescent Behavior
- Trial name
- SPaRO (NCT05241847)
- Testing
- PeLTQL delivery via electronic means
- Where
- 7 sites in United States, Canada
- Volunteers
- 200 people
- Sponsor
- University of Pittsburgh