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Trial Title:
ASH Research Collaborative Data Hub
NCT ID:
NCT05775224
Condition:
Sickle Cell Disease
Multiple Myeloma
Conditions: Official terms:
Multiple Myeloma
Anemia, Sickle Cell
Conditions: Keywords:
SCD
Sickle Cell
Myeloma
Study type:
Observational [Patient Registry]
Overall status:
Enrolling by invitation
Study design:
Time perspective:
Other
Summary:
Benign and malignant hematologic diseases are relatively rare conditions within the
spectrum of medical practice in any one site of care. Nonetheless, recent research in
hematologic conditions from basic, translational, clinical and population perspectives
offer the possibility of improving the way that these diseases are treated, and the
outcomes experienced by patients. A repository that aggregates and validates this data
across institutions and other practice settings is needed in order to identify variation
in care, new findings, and further research.
Detailed description:
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the
American Society of Hematology (ASH) in 2018 that aims to improve the lives of those
affected by blood diseases by fostering collaborative partnerships to accelerate progress
in hematology. The foundation of the ASH RC is its Data Hub, a technology platform that
facilitates the exchange of information by aggregating in one place, and making available
for inquiry, research-grade data on hematologic diseases. In 2019, ASH RC launched its
first research initiative, the Sickle Cell Disease (SCD) Clinical Trials Network (CTN),
with the goal of optimizing SCD clinical research operations. As part of its core
functions, the SCD-CTN leverages the Data Hub to collect key information and identify
gaps that will help advance SCD research and treatment.
The primary goal of the Data Hub is to further the scientific knowledge base for the
diagnosis, understanding, and management of benign and malignant hematologic conditions
by assembling data collected in routine clinical care and closed clinical trials.
Secondary goals are to characterize and study practice patterns for benign and malignant
hematologic conditions in clinical practice, and to aggregate patient-reported data to
further understand and improve the patient experience. These objectives will be fulfilled
by amassing data from patients' electronic medical records and other data sources within
institutions and networks to support prospective data collection efforts, such as those
that include patient reported outcomes.
Criteria for eligibility:
Study pop:
There will be no discrimination or bias with respect to inclusion on the basis of sex,
race, or religion.
Sampling method:
Non-Probability Sample
Criteria:
To be included in the Data Hub, patients must have documented sickle cell disease and/or
active multiple myeloma since 2015.
Gender:
All
Minimum age:
N/A
Maximum age:
N/A
Healthy volunteers:
No
Locations:
Facility:
Name:
ASH Research Collaborative
Address:
City:
Washington
Zip:
20036
Country:
United States
Start date:
April 29, 2020
Completion date:
April 29, 2099
Lead sponsor:
Agency:
ASH Research Collaborative
Agency class:
Other
Source:
ASH Research Collaborative
Record processing date:
ClinicalTrials.gov processed this data on November 12, 2024
Source: ClinicalTrials.gov page:
https://clinicaltrials.gov/ct2/show/NCT05775224
