ASH Research Collaborative Data Hub

NCT05775224 | Enrolling By Invitation

• 1 other identifier: 20181051
• Study Type: observational
• Target: 100,000
• Locations: 1 country
• Sites: 1

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.

Conditions

Sickle Cell Disease; Multiple Myeloma

Keywords

SCD; Sickle Cell; Myeloma

Outcome Measures

Primary Outcomes (1)

• 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)

Study Arms (2)

Sickle Cell Disease

Multiple Myeloma

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• 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.

Contact the study team to discuss eligibility requirements. They can help determine if this study is right for you.

Sponsors & Collaborators

• ASH Research Collaborative: lead

Study Sites (1)

ASH Research Collaborative

Washington D.C., District of Columbia, 20036, United States

Location

MeSH Terms

Conditions

Anemia, Sickle Cell; Multiple Myeloma; Neoplasms, Plasma Cell

Condition Hierarchy (Ancestors)

Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hematologic Diseases; Hemic and Lymphatic Diseases; Hemoglobinopathies; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Neoplasms by Histologic Type; Neoplasms; Hemostatic Disorders; Vascular Diseases; Cardiovascular Diseases; Paraproteinemias; Blood Protein Disorders; Hemorrhagic Disorders; Lymphoproliferative Disorders; Immunoproliferative Disorders; Immune System Diseases

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Target Duration: 50 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 13, 2023
• First Posted: March 20, 2023
• Study Start: April 29, 2020
• Primary Completion (Estimated): April 29, 2099
• Study Completion (Estimated): April 29, 2099
• Last Updated: June 17, 2024

Record last verified: 2024-06

Locations

US (1)