Clinical trials: Data Sharing, active
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
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
Substance Abuse, Decision Making, Shared
Data2Action Oregon Project: Supporting Data-driven Decision-Making for Substance Use Services, Policy, and Overdose Prevention
Oregon's decision makers (e.g., community service providers, public health, justice, advocacy groups, payers) are calling for comprehensive, current, and trusted data to inform how they allocate resources to improve substance use…
- Conditions
- Substance Abuse, Decision Making, Shared, Implementation Science, Decision Making
- Trial name
- D2A Oregon (NCT06852170)
- Testing
- Co-Design Sessions (CDS), Data products
- Where
- United States
- Volunteers
- 341 people, healthy volunteers welcome
- Sponsor
- Chestnut Health Systems
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
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
Homozygous Familial Hypercholesterolemia
HoFH, the International Clinical Collaborators Registry
Homozygous familial hypercholesterolemia (HoFH), a rare inherited disorder caused by bi-allelic mutations in the LDL Receptor pathway, is characterized by extremely elevated levels of low-density lipoprotein cholesterol (LDL-C)…
- Trial name
- HICC (NCT04815005)
- Testing
- Demographics, diagnosis type, genotype, lipid profile, treatment allocation, country of residence.
- Where
- 4 sites in United States, Netherlands and 1 more
- Volunteers
- 1,000 people
- Sponsor
- University of Pennsylvania
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
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
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
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