Clinical trials: Patient Participation
IBM, IIM
MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)
Myositis diseases are each rare diseases. As in other rare diseases, people living with myositis diseases face physical and psychosocial challenges that may not be recognized in current research priorities.
- Conditions
- IBM, IIM, Myositis, Inflammatory Myopathy
- Trial name
- MIHRA-PRISMS (NCT07374107)
- Testing
- No intervention - qualitative and mixed methods investigations
- Where
- United States
- Volunteers
- 700 people
- Sponsor
- Myositis International Health & Research Collaborative Alliance Foundation
Patient Compliance
Parent Engagement Package: Initial Testing of Strategies to Increase Participation in Parenting Interventions
This study evaluated the effectiveness of strategies for engaging parents into parenting programs. Engagement strategies included a booklet showing testimonial quotes and photos from prior participants, a recommendation to attend…
- Trial name
- NCT03147547
- Testing
- Promotional Brochure, Family Testimonial Flyer, Teacher Endorsement
- Where
- United States
- Volunteers
- 122 people, healthy volunteers welcome
- Sponsor
- Arizona State University
Spinal Cord Injuries
Living With Spinal Cord Injury.
A Spinal Cord Injury (SCI) often drastically disrupts the lives of affected patients and their relatives and caregivers. This observational study will provide new knowledge on how patients and their family caregivers cope in the…
- Trial name
- NCT03709732
- Testing
- no intervention
- Where
- Norway
- Volunteers
- 2,654 people
- Sponsor
- St. Olavs Hospital
Kidney Transplantation
Pharmacogenetic Study of CellCept (Mycophenolate Mofetil) in Kidney Transplant Patients.
This study will determine which, if any, allelic variants of mycophenolic acid (MPA) metabolizing enzymes, drug transporters and drug targets are associated with the observed variation in pharmacokinetic and pharmacodynamic…
- Trial name
- NCT00337493
- Testing
- mycophenolate mofetil [CellCept], Cyclosporine or tacrolimus
- Where
- 20 sites in United States
- Volunteers
- 155 people
- Sponsor
- Hoffmann-La Roche
Adolescent Idiopathic Scoliosis
Comparing Use of Radiographs Versus Patient Empowerment (CURVE)
Objective: To evaluate the (cost-)effectiveness of a new patient-empowered follow up (FU) protocol in patients with Adolescent idiopathic Scoliosis (AIS) that is based on patient-reported outcome measures (PROMs), self-assessment…
- Trial name
- CURVE (NCT05379127)
- Testing
- Patient-empowered follow up, Standard follow-up
- Where
- 23 sites in Netherlands
- Volunteers
- 812 people
- Sponsor
- Radboud University Medical Center
Cerebral Palsy, Diplegia
Dual-task Training in Children With Cerebral Palsy
There are studies investigating the dual-task effect in sitting, standing up without sitting and walking in children with spastic CP.
- Conditions
- Cerebral Palsy, Diplegia, Hemiplegic Cerebral Palsy, Physical Disability
- Trial name
- NCT04777773
- Testing
- dual-task training
- Where
- Turkey (Türkiye)
- Volunteers
- 25 people
- Sponsor
- Sema BÜĞÜŞAN ORUÇ
Fear of Cancer Recurrence, Renal Cell Carcinoma (Kidney Cancer)
Patient-partnered Research in Investigating Fear of Cancer Recurrence in Kidney Cancer
The goal of this observational study is to gather real-world information about Fear of Cancer Recurrence (FCR) following surgery in patients with renal cell carcinoma (RCC) and their partners/spouses by 1) establishing a panel…
- Trial name
- PP-RECURK (NCT07234656)
- Testing
- Phase 1: Establishment of a patient-partner panel, Phase 2: Feasibility testing of FCR questions, mode of administration and timing for investigating Fear of Cancer Recurrence
- Where
- 3 sites in Denmark
- Volunteers
- 105 people, healthy volunteers welcome
- Sponsor
- Brigitta Rasmussen Villumsen
Autism Spectrum Disorders
Improving Participation of Autistic Children and Adolescents in the Habilitation Process
This project aims to explore the impact of a survey-based and a meeting-based needs assessment models on 7 to 17 year old autistic children's participation in the needs assessment process at the initial reception when enrolled at…
- Trial name
- IMPAC (NCT06381856)
- Where
- Sweden
- Volunteers
- 120 people
- Sponsor
- Region Örebro County
Genetic Predisposition
Next Generation to Identify Genetic Causes of Disease in Patients Participating in NICHD Clinical Protocols
Background: The purpose of this study is to identify changes in genes that cause human diseases. We would like to obtain some of you or your child s DNA and test for changes in genes that may contribute to a disease in you or…
- Trial name
- NCT01375543
- Where
- United States
- Volunteers
- 128 people
- Sponsor
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Engagement, Patient
Enhancing Engagement With Digital Mental Health Care
This proposal is a partnership between Mental Health America (MHA), a nonprofit mental health advocacy and resource organization, Talkspace (TS), a for-profit, online digital psychotherapy organization, and the University of…
- Trial name
- NCT04507360
- Testing
- Study 1, Demographics Survey, Study 1, Next Steps Survey, Study 1, Generic Response
- Where
- 3 sites in United States
- Volunteers
- 78,390 people, healthy volunteers welcome
- Sponsor
- University of Washington
Anxiety, Depression in Adolescence
Co-designing Adaptations of a Digital Mental Health Intervention (Wysa) for Adolescent Girls With Anxiety or Depression in Rural India
The goal of this study is to culturally and contextually adapt Wysa, an evidence-based AI-powered digital mental health intervention (DMHI), for adolescent girls (ages 13-18) with symptoms of anxiety and/or depression in rural…
- Conditions
- Anxiety, Depression in Adolescence, Anxiety Disorder of Adolescence
- Trial name
- NCT07595029
- Testing
- Digital psychosocial tool
- Volunteers
- 179 people, healthy volunteers welcome
- Sponsor
- Wysa
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
Autistic Spectrum Disorder, Patient Empowerment
Development and Evaluation of "Period Kits" for Adolescents With Intellectual and Developmental Disabilities
This study will involve the development, distribution, and evaluation of "period kits" for pre-menarchal adolescents with intellectual and cognitive disabilities (IDD) (e.g., autism spectrum disorder and Down syndrome) in…
- Conditions
- Autistic Spectrum Disorder, Patient Empowerment, Menstrual Discomfort
- Trial name
- NCT05497167
- Testing
- Period Kit
- Where
- United States
- Volunteers
- 50 people, healthy volunteers welcome
- Sponsor
- Tufts Medical Center
Physical Activity, Patient Engagement
Active KC: a Text Message Based Intervention for Physical Activity
Active KC will involve delivering PA support tools to individuals interested in increasing their physical activity. The tools involve provision of a Garmin wearable activity monitor and participant-tailored behavior change…
- Trial name
- NCT05110508
- Testing
- Text Based Behavioral Intervention for Physical Activity
- Where
- United States
- Volunteers
- 210 people, healthy volunteers welcome
- Sponsor
- Children's Mercy Hospital Kansas City
Parkinson's Disease
A Study to Evaluate the Effects of Tyramine in Patients Who Completed the PRESTO Study.
This study is to determine if Tyramine has any side effects on patients receiving 0.5mg, 1mg of Rasagiline or Placebo
- Trial name
- NCT00203125
- Testing
- rasagiline mesylate, tyramine
- Volunteers
- 55 people
- Sponsor
- Teva Branded Pharmaceutical Products R&D, Inc.
Systemic Lupus Erythematosus
Observational Study Investigating Demographic and Clinical Characteristics of SLE Patients in Egypt
Systemic lupus erythematosus (SLE) is an autoimmune condition characterized by a complicated, unclear etiology that involves various complex factors.
- Trial name
- ROSE (NCT07144514)
- Volunteers
- 276 people
- Sponsor
- AstraZeneca
Neoplasms
ACS Community Access to Resources Education and Support
The goal of this study is to evaluate the pilot phase of ACS Cares to identify key implementation outcomes and assess effectiveness of the program to improve distress, enhance communication, and reduce missed appointments and…
- Trial name
- ACS CARES (NCT06285929)
- Testing
- ACS CARES Student Navigation
- Where
- 4 sites in United States
- Volunteers
- 2,000 people, healthy volunteers welcome
- Sponsor
- American Cancer Society, Inc.
Vaccine Hesitancy
The Impact of Community and Patient Engagement Practices on Vaccine Confidence in the United States
The primary objective of this study is to demonstrate an empirical relationship between community- engagement practices, and between patient-centric clinical trial design, execution and communication practices, and vaccine…
- Trial name
- NCT06374134
- Testing
- Community Engagement Practice, Patient-Centric Protocol Element
- Volunteers
- 30 people
- Sponsor
- Tufts University
Coronary Artery Disease
Effect of an Educational Intervention on Cardiac Patients' Participation Rate in Cardiac Rehabilitation Programs
The main aim of the study is to determine the effectiveness of an educational intervention designed to increase attendance of coronary artery bypass grafting (CABG) patients at Cardiac Rehabilitation Programs (CRPs) on actual CRP…
- Trial name
- MECRIS (NCT00356863)
- Testing
- Increasing awareness to cardiac rehabilitation programs
- Where
- Israel
- Volunteers
- 1,024 people
- Sponsor
- Sheba Medical Center
Pain, Irritability
Implementation of the Pain and Irritability of Unknown Origin (PIUO) Pathway in Community Pediatric Practices
The Pain and Irritability of Unknown Origin (PIUO) Pathway is a clinical pathway that was developed to evaluate and manage unexplained pain and irritability for children with severe neurological impairments (SNI) who cannot…
- Conditions
- Pain, Irritability, Neuropathic Pain
- Trial name
- NCT06869928
- Testing
- PIUO Pathway
- Where
- Canada
- Volunteers
- 20 people
- Sponsor
- University of British Columbia