Clinical trials: Patient-Reported Outcomes
Lumbar Spine Degeneration
Development of a Patient-reported Outcome Instrument for Patients With Lumbar Degenerative Disease After Lumbar Fusion
The commonly used scales (ODI+JOA-29+VAS) lack the assessment of lumbar stiffness, and there is no scale for evaluating lumbar stiffness in China.Based on the Delphi method and the analytic hierarchy process, this study will…
- Trial name
- DPROIPLDDALF (NCT04781517)
- Where
- China
- Volunteers
- 400 people
- Sponsor
- Peking University Third Hospital
Nephrolithiasis, Kidney Stone
Observational Approach Versus Surgical Intervention for Stones
The aims of the Observational Approach versus Surgical Intervention for Asymptomatic Stone (OASIS) trial are: 1) to determine whether observation compared to upfront surgery results in less healthcare-related life disruption due…
- Trial name
- OASIS (NCT07718802)
- Testing
- Surgery, Observation
- Where
- 4 sites in United States
- Volunteers
- 1,658 people
- Sponsor
- Children's Hospital of Philadelphia
Immune Thrombocytopenia
ICON1: Treatment Decisions and Outcomes in Pediatric Refractory ITP
The purpose of this study is to understand physician treatment decisions in selecting specific second line treatments in pediatric ITP and to determine the effectiveness of different second line ITP treatments.
- Trial name
- ICON1 (NCT01971684)
- Testing
- Second Line ITP agents
- Where
- 29 sites in United States, Canada
- Volunteers
- 120 people
- Sponsor
- Boston Children's Hospital
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
Diabetes Mellitus, Type I
Effect of Advanced Hybrid Closed Loop System, MiniMed 780G in Newly Diagnosed Children and Adolescents With Type 1 Diabetes on Glycemic Control and Patient Reported Outcomes Compared to Standard Insulin Therapy Historical Data (AHCL in New Onset T1D Children Study)
The objective of this study is to evaluate glycemic control of users of the AHCL system MiniMed 780G with GS4 calibration-free sensor in children and adolescents with newly diagnosed T1D implemented directly upon T1D diagnosis in…
- Trial name
- NCT06919029
- Testing
- Advanced Hybrid Closed Loop from onset of type 1 diabetes in children
- Where
- Greece
- Volunteers
- 30 people
- Sponsor
- National and Kapodistrian University of Athens
Breast Neoplasm Malignant Female
Study Evaluating the Impact of Electronic Surveys on Patient-physician Communication and Quality of Life in Breast Cancer Patients
PRO-COM Project: Randomized-controlled study evaluating the impact of electronic patient reported outcome (ePRO) surveys on patient-physician communication and quality of life in patients with advanced breast cancer
- Trial name
- NCT03525990
- Testing
- Questionnaires
- Where
- 2 sites in Austria
- Volunteers
- 62 people
- Sponsor
- Dr. Vera Trommet
Hemophilia
Patient Reported Outcomes Burdens and Experiences - Phase 2
The Patient Reported Outcomes, Burdens, and Experiences (PROBE) Study aims to develop a new global tool to enhance the direct patient-voice in health care decision-making.
- Trial name
- PROBE (NCT02439710)
- Testing
- Quality of life measure (survey)
- Where
- Canada
- Volunteers
- 656 people
- Sponsor
- McMaster University
Pediatric Acute Myeloid Leukemia
Home Away From Home - Quality of Life Surveys
Treatment for pediatric acute myeloid leukemia (AML) involves intensive chemotherapy regimens that result in periods of profound neutropenia leaving patients susceptible to severe infectious complications.
- Trial name
- Aim 3 (NCT02777021)
- Where
- 15 sites in United States
- Volunteers
- 154 people, healthy volunteers welcome
- Sponsor
- Children's Hospital of Philadelphia
Fibrodysplasia Ossificans Progressiva (FOP)
The Fibrodysplasia Ossificans Progressiva (FOP) Registry
The Fibrodysplasia Ossificans Progressiva (FOP) Registry is a global, non-interventional, voluntary database that captures demographic and disease data directly from FOP patients and their caregivers via a secure, web-based…
- Trial name
- NCT02745158
- Where
- United States
- Volunteers
- 800 people
- Sponsor
- The International FOP Association
ACL, ACL Injury
Mindfulness and ACL Surgery
Anterior cruciate ligament (ACL) surgery patients experience physical trauma, both in the physical injury itself and following surgery, and face potential long-lasting adverse effects such as muscle weakness, diminished joint…
- Trial name
- NCT05542563
- Testing
- Healthy Minds Program (HMP) App
- Where
- United States
- Volunteers
- 47 people
- Sponsor
- University of Wisconsin, Madison
Osteosarcoma, Nephrotoxicity
Preventing Nephrotoxicity and Ototoxicity From Osteosarcoma Therapy
Osteosarcoma is the most common type of bone cancer in children, adolescents and young adults. Treatment with surgery and a combination of three conventional chemotherapy drugs can cure nearly two-thirds patients with…
- Conditions
- Osteosarcoma, Nephrotoxicity, Ototoxicity
- Trial name
- NCT01848457
- Testing
- Pantoprazole, High-dose methotrexate infusion duration
- Where
- United States
- Volunteers
- 13 people
- Sponsor
- Children's Hospital of Philadelphia
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
Cancer, Late Effects
FRAME - Implementation of a PRO Measure to Inform Patient-Centered Survivorship Care in Oncology Outpatient Visits
FRAME is a patient-centered survivorship care model embedded in routine oncology visits. It consists of: (1) a pre-visit patient-reported questionnaire (FRAME-PRO), (2) a clinician-patient dialogue guided by the responses, and…
- Trial name
- FRAME (NCT07281820)
- Testing
- FRAME model (questionnaire + dialogue + management plan)
- Where
- Denmark
- Volunteers
- 30 people
- Sponsor
- Vejle Hospital
Colorectal Cancer, Fatigue
Patient-Reported Outcomes in Long-Term Survivors of Colon and Rectal Cancers
RATIONALE: Learning about quality of life, symptoms, and health behaviors in colorectal cancer survivors may help to determine the long-term effects of colon and rectal cancer treatments and may help to improve the quality of…
- Conditions
- Colorectal Cancer, Fatigue, Long-term Effects Secondary to Cancer Therapy in Adults, Pain
- Trial name
- NCT00410579
- Testing
- Telephone interview
- Where
- 200 sites in United States
- Volunteers
- 744 people
- Sponsor
- NSABP Foundation Inc
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
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
Kidney Stone, Nephrolithiasis
Pediatric KIDney Stone (PKIDS) Care Improvement Network
The goals of this study are to improve the ability of pediatric patients and their caregivers to select surgical treatment options for kidney stones and to enable urologists to use techniques that result in the best outcomes for…
- Trial name
- PKIDS (NCT04285658)
- Testing
- Ureteroscopy, Percutaneous Nephrolithotomy, Shock Wave Lithotripsy
- Where
- 31 sites in United States, Canada
- Volunteers
- 1,290 people
- Sponsor
- Children's Hospital of Philadelphia
Anterior Cruciate Ligament Rupture
BFRT in Adolescents After ACL Reconstruction
This is an interventional study that will examine effects of blood flow restriction training (BFRT) in adolescents aged 12-18 after anterior cruciate ligament reconstruction surgery (ACLR).
- Trial name
- NCT04390035
- Testing
- Blood Flow Restriction using Delfi Personalized Tourniquet System
- Where
- United States
- Volunteers
- 120 people, healthy volunteers welcome
- Sponsor
- Children's Healthcare of Atlanta
Edentulism
A Pilot Randomized Clinical Study Comparing Patient-Reported Outcomes and Complications for Mandibular Implant Overdentures Retained by Different Splinted Attachment Systems
This exploratory pilot randomized clinical study enrolled ten completely edentulous participants who experienced retention and stability problems with conventional mandibular complete dentures.
- Trial name
- M15011122 (NCT07373340)
- Testing
- overdentures with bar locator attachments, overdentures with bar ball attachments
- Where
- Egypt
- Volunteers
- 10 people
- Sponsor
- Mansoura University
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