Clinical trials: Data Sharing
Atrial Fibrillation, Patient Engagement
Data-driven SDM to Reduce Symptom Burden in AF
This study is a single-group feasibility study evaluating decision aid visualizations which display common post-ablation symptom patterns as a tool for shared decision-making.
- Trial name
- NCT04993807
- Testing
- Shared decision-making tool
- Where
- 2 sites in United States
- Volunteers
- 75 people
- Sponsor
- Columbia University
Hip Fractures (i.e. Femoral Neck or Intertrochanteric Hip Fractures), Hip Fractures (ICD-10 72.01-72.2)
Improving Shared DECISion-making in oldEr Hip Fracture Patients Living With Frailty
Title Improving shared decision-making in older hip fracture patients living with frailty Aim To use routinely information normally collected by the NHS, and interviews with patients, families, and healthcare professionals, to…
- Conditions
- Hip Fractures (i.e. Femoral Neck or Intertrochanteric Hip Fractures), Hip Fractures (ICD-10 72.01-72.2), Hip Fracture, Hip Fracture, Post Surgery Recovery, Muscle Resilience
- Trial name
- DECIDE-HIP (NCT07687108)
- Where
- United Kingdom
- Volunteers
- 42 people
- Sponsor
- University of Southampton
COVID-19
Duke COVID-19 Shared Data and Specimen Repository
The purpose of this data repository is to provide a secure and centralized storage location and resource for the collection of essential data and medical specimens, across COVID-19 related protocols at Duke.
- Trial name
- NCT04368234
- Where
- United States
- Volunteers
- 100,000 people
- Sponsor
- Duke University
Diabetes Mellitus, Type 1
National Institute of Diabetes and Digestive Kidney Diseases* Share Plus: Continuous Glucose Monitoring With Data Sharing in Older Adults With Type 1 Diabetes* and Their Care Partners to Improve Time in Range and Reduce Diabetes Distress.
The purpose of this study is to test the Share plus intervention aimed at improving the use of data sharing between people with diabetes and their care partners in order to maximize the benefits of continuous glucose monitoring.
- Trial name
- NIDDK T1D (NCT05937321)
- Testing
- Share plus intervention, Control group
- Where
- United States
- Volunteers
- 168 people
- Sponsor
- University of Utah
Type 2 Diabetes
AI Ready and Exploratory Atlas for Diabetes Insights
The study will collect a cross-sectional dataset of 4000 people across the US from diverse racial/ethnic groups who are either 1) healthy, or 2) belong in one of the three stages of diabetes severity (pre-diabetes/diet…
- Trial name
- AI-READI (NCT06002048)
- Where
- 3 sites in United States
- Volunteers
- 4,000 people
- Sponsor
- University of Washington
Breast Cancer, Prostate Cancer
ONCOlogy-targeted NLP-powered Federated Hyper-archItecture and Data Sharing Framework for Health Data Reusability
ONCO-FIRE proposes to build a novel hyper-architecture and a common data model (CDM) for oncology, as well as a rich, modular toolset enabling significantly increased interoperability, exploitability, use and reuse of diverse…
- Trial name
- ONCO-FIRE (NCT05060835)
- Testing
- Virtual assistants offering medical recommendations to health care profesionals
- Volunteers
- 5,000 people
- Sponsor
- Instituto de Investigacion Sanitaria La Fe
Prostate Cancer, Bladder Cancer
Decipher Genomics Resource for Intelligent Discovery
To prospectively evaluate the utility of genomic expression data and whole slide digital pathology image data as a tool to better characterize the tumors of individual patients, and to understand how genomic and histologic…
- Conditions
- Prostate Cancer, Bladder Cancer, Renal Cancer
- Trial name
- GRID® (NCT02609269)
- Testing
- Decipher Cancer Classifier
- Volunteers
- 1,000,000 people
- Sponsor
- GenomeDx Biosciences Corp
Data Sharing, Information Dissemination
Data Sharing Project Part 2
Patient data from clinical records are increasingly recognised as a valuable resource and a number of global initiatives exist to promote and enable the sharing of data.
- Conditions
- Data Sharing, Information Dissemination, Mental Health
- Trial name
- NCT05298514
- Testing
- Not applicable - qualitative research study
- Volunteers
- 32 people
- Sponsor
- King's College London
Orthotopic Heart Transplantation
Impact of Race and Re-Transplantation
For children who develop graft failure following cardiac transplantation, retransplantation is often considered. While some centers have reported equivalent results for retransplantation as compared to primary transplantation…
- Trial name
- NCT00229788
- Where
- United States
- Sponsor
- Children's Healthcare of Atlanta
Breast Cancer Patients, Melanoma Cancer
The 4D PICTURE Project: Evaluating Metro Mapping As a Method to Support Shared Decision Making in Oncology
The goal of this observational study is to evaluate the impact of MetroMapping (a service design methodology) on Shared Decision Making in cancer care paths.
- Conditions
- Breast Cancer Patients, Melanoma Cancer, Prostate Cancer, Supportive Care in Cancer
- Trial name
- NCT06685562
- Where
- 3 sites in Denmark, Netherlands and 1 more
- Volunteers
- 500 people
- Sponsor
- Leiden University Medical Center
Liver Cancer
Sharable Knowledge Mining Platform
As a result of increasing adoption of health information systems in hospitals, more and more health records can be gathered and accumulated in the healthcare data repository.
- Trial name
- NCT01178801
- Where
- Taiwan
- Volunteers
- 10,000 people
- Sponsor
- National Taiwan University Hospital
Overweight, Obesity
Sharing Digital Self-Monitoring Data With Others to Enhance Long-Term Weight Loss
Adults attempting weight loss through lifestyle modification (LM) typically find maintenance of behavior change difficult. Outcomes might be improved if participants are provided with sustained sources of accountability and…
- Trial name
- FitLink (NCT05180448)
- Testing
- Coach Share On, Group Share On, Friend/Family Share On
- Where
- United States
- Volunteers
- 321 people, healthy volunteers welcome
- Sponsor
- Drexel University
Small Bowel Disease, Gastrointestinal Diseases
Anonymous Data Sharing for Small Bowel
Crohn's disease is characterised by an abnormal immunological response within the bowel wall leading to abnormal wall thickening, stricturing (narrowing), fistulation (abnormal connections) to adjacent organs and strictures…
- Trial name
- NCT06868875
- Where
- United Kingdom
- Volunteers
- 1,500 people, healthy volunteers welcome
- Sponsor
- University College, London
Focus Groups
Using Focus Groups to Explore Perceptions of Adults With Low Socioeconomic Status Regarding the NutriQuébec Study
NutriQuébec is a web-based prospective cohort study aiming to monitor and analyse the evolution of Québec population eating habits through annual questionnaires.
- Trial name
- NCT03849846
- Testing
- Focus groups
- Where
- Canada
- Volunteers
- 28 people, healthy volunteers welcome
- Sponsor
- Laval University
Binge Eating, Binge-Eating Disorder
Identifying Effective Technological-based Augmentations to Enhance Outcomes From Self-help Cognitive Behavior Therapy for Binge Eating
The purpose of this study is to test the feasibility, acceptability and efficacy of two technology-based intervention systems (including an Advanced Digital Data Sharing (ADDS) with Coaches or a smartphone-based just-in-time…
- Conditions
- Binge Eating, Binge-Eating Disorder, Bulimia Nervosa, Bulimia
- Trial name
- CONQUER (NCT05937243)
- Testing
- Base self-help CBT program, Just-in-time, adaptive intervention (JITAIs) system, Advanced Digital Data Sharing (ADDS) with Coaches
- Where
- United States
- Volunteers
- 76 people
- Sponsor
- Drexel University
Pulmonary Disease, Chronic Obstructive, Exacerbation Copd
REal-time Data Monitoring for Shared Adaptive, Multi-domain and Personalised Prediction and Decision Making for Long-term Pulmonary Care Ecosystems (RE-SAMPLE)
The main objective of this RE-SAMPLE cohort study is to identify from a real-world data (RWD) set that will be collected, a subset of data that can be potentially used as important predictors and parameters for disease…
- Conditions
- Pulmonary Disease, Chronic Obstructive, Exacerbation Copd, Comorbidities and Coexisting Conditions
- Trial name
- RE-SAMPLE (NCT04955080)
- Where
- Netherlands
- Volunteers
- 216 people
- Sponsor
- Medisch Spectrum Twente
Creation of an Italian Network of Biobanks of Rare Diseases
ScATtEred Rare Disease Biobanks: a Model of Sample/Data Collection With susTainablE and Shared Criteria
Rare diseases (RDs) have been defined by the European Union (EU) as life-threatening or chronically debilitating conditions affecting less than 1 person in 2000.
- Trial name
- SATELLITES (NCT06782230)
- Where
- Italy
- Volunteers
- 800 people, healthy volunteers welcome
- Sponsor
- IRCCS Policlinico S. Donato
Uveal Melanoma
Prospective Registration Of Patient Data and Quality of Life in Eye Melanoma Patients
PROQEM is a prospective cohort study among patients diagnosed with uveal melanoma to assess quality of life before and in the first five years after treatment.
- Trial name
- PROQEM (NCT05377957)
- Testing
- Quality of life questionnaires, Discrete choice experiment, Shared decision-making analysis
- Where
- Netherlands
- Volunteers
- 500 people
- Sponsor
- Leiden University Medical Center
Musculoskeletal Pain
Can a Digital Tooll Facilitate Shared Decision-making and Increase Self-efficacy in Vocational Rehabilitation?
The study investigates both the effects and the experienced value of the mobile application, MIRA, which is a combination of an electronic diary, a dialogue tool and a decision support tool.
- Trial name
- NCT04695002
- Testing
- MIRA, Control
- Where
- Denmark
- Volunteers
- 20 people
- Sponsor
- Region MidtJylland Denmark
Obesity
Reporting Patient Generated Health Data and Patient Reported Outcomes With Health Information Technology
This study will assess the feasibility of using patient-centered, commercial off-the-shelf (COTS) health information technology (IT) solutions to collect patient generated health data (PGHD) and patient-reported outcomes (PROs)…
- Trial name
- NCT03386773
- Testing
- 16-week program, Patient generated health data
- Where
- United States
- Volunteers
- 300 people
- Sponsor
- Denver Health and Hospital Authority