Characteristics and Treatment Patterns of Patients With Sickle Cell Disease in Globin Research Network for Data and Discovery Registry

Disease Characteristics and Treatment Patterns of Patients With Sickle Cell Disease in Globin Research Network for Data and Discovery (GRNDaD) Registry

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT06662812

Enrollment

1665

Registered

2024-10-29

Start date

2021-10-06

Completion date

2023-12-01

Last updated

2024-10-29

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Sickle Cell Disease

Brief summary

This was a retrospective observational cohort study. This study was a secondary analysis of individuals with sickle cell disease (SCD) enrolled in the GRNDaD registry.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

RETROSPECTIVE

Eligibility

Sex/Gender

ALL

Healthy volunteers

Inclusion criteria

* Diagnosis of SCD. * Signed consent to participate in GRNDaD registry.

Exclusion criteria

• None identified at this time.

Design outcomes

Primary

Measure	Time frame	Description
Number of Patients in the Globin Research Network for Data and Discovery (GRNDaD) Registry who Received a Disease Modifying Therapy (DMT)	Up to 2 years	DMTs included: hydroxyurea, voxelotor, crizanlizumab, l-glutamine, and chronic red cell transfusion.

Secondary

Measure	Time frame
Mean Number of Hospital Admissions	Up to 2 years
Number of Emergency Department Visits Categorized by Age	Up to 2 years
Mean Number of Emergency Department Visits	Up to 2 years
Number of Patients in the Globin Research Network for Data and Discovery (GRNDaD) Registry Using Hydroxyurea Categorized by Gender	Up to 2 years
Number of Patients in the GRNDaD Registry Using Hydroxyurea Categorized by Genotype	Up to 2 years
Number of Patients in the GRNDaD Registry Using Hydroxyurea Categorized by Age	Up to 2 years
Number of Patients in the GRNDaD Registry Using Voxelotor Categorized by Gender	Up to 2 years
Number of Patients in the GRNDaD Registry Using Voxelotor Categorized by Genotype	Up to 2 years
Number of Patients in the GRNDaD Registry Using Voxelotor Categorized by Age	Up to 2 years
Number of Hospital Admissions Categorized by Age	Up to 2 years
Number of Patients in the GRNDaD Registry Using Crizanlizumab Categorized by Genotype	Up to 2 years
Number of Patients in the GRNDaD Registry Using Crizanlizumab Categorized by Age	Up to 2 years
Number of Patients in the GRNDaD Registry Using L-glutamine Categorized by Gender	Up to 2 years
Number of Patients in the GRNDaD Registry Using L-glutamine Categorized by Genotype	Up to 2 years
Number of Patients in the GRNDaD Registry Using L-glutamine Categorized by Age	Up to 2 years
Number of Patients in the GRNDaD Registry Using Chronic Transfusion Categorized by Gender	Up to 2 years
Number of Patients in the GRNDaD Registry Using Chronic Transfusion Categorized by Genotype	Up to 2 years
Number of Patients in the GRNDaD Registry Using Chronic Transfusion Categorized by Age	Up to 2 years
Number of Patients in the GRNDaD Registry Using Crizanlizumab Categorized by Gender	Up to 2 years

Countries

United States

Outcome results