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ASH Research Collaborative Data Hub

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT05775224
Recruitment Status : Enrolling by invitation
First Posted : March 20, 2023
Last Update Posted : March 20, 2023
Information provided by (Responsible Party):
ASH Research Collaborative

Brief 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.

Condition or disease
Sickle Cell Disease Multiple Myeloma

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.

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Study Type : Observational [Patient Registry]
Estimated Enrollment : 100000 participants
Observational Model: Other
Time Perspective: Other
Target Follow-Up Duration: 50 Years
Official Title: ASH Research Collaborative Data Hub Protocol: A Multi-Center Data Hub of Individuals Living With Hematologic Disease
Actual Study Start Date : April 29, 2020
Estimated Primary Completion Date : April 29, 2099
Estimated Study Completion Date : April 29, 2099

Sickle Cell Disease
Multiple Myeloma

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

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
There will be no discrimination or bias with respect to inclusion on the basis of sex, race, or religion.
To be included in the Data Hub, patients must have documented sickle cell disease and/or active multiple myeloma since 2015.

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT05775224

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United States, District of Columbia
ASH Research Collaborative
Washington, District of Columbia, United States, 20036
Sponsors and Collaborators
ASH Research Collaborative
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Responsible Party: ASH Research Collaborative Identifier: NCT05775224    
Other Study ID Numbers: 20181051
First Posted: March 20, 2023    Key Record Dates
Last Update Posted: March 20, 2023
Last Verified: March 2023

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by ASH Research Collaborative:
Sickle Cell
Additional relevant MeSH terms:
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Multiple Myeloma
Anemia, Sickle Cell
Neoplasms, Plasma Cell
Neoplasms by Histologic Type
Hemostatic Disorders
Vascular Diseases
Cardiovascular Diseases
Blood Protein Disorders
Hematologic Diseases
Hemorrhagic Disorders
Lymphoproliferative Disorders
Immunoproliferative Disorders
Immune System Diseases
Anemia, Hemolytic, Congenital
Anemia, Hemolytic
Genetic Diseases, Inborn