ASH Research Collaborative Data Hub

Study Overview
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Brief Summary
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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
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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.

Official Title
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ASH Research Collaborative Data Hub Protocol: A Multi-Center Data Hub of Individuals Living With Hematologic Disease

Conditions
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Sickle Cell Disease, Multiple Myeloma

Participation Criteria
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Eligibility Criteria
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To be included in the Data Hub, patients must have documented sickle cell disease and/or active multiple myeloma since 2015.
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Sickle Cell Disease<br> | |
| Multiple Myeloma<br> | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Data Collection | Aims of the Data Hub include collecting clinical data to gain further insights about diagnosis, treatment, prognosis, and risk factors of hematologic disorders. | 50 year recruitment period (there will be continuous subgroup analyses through study completion) | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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SCD, Sickle Cell, Myeloma