Haemoglobinopathy Registry

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ANZCTR

Registry ID

ACTRN12617000051347

Acronym

HbR

Enrollment

782

Registered

2017-01-11

Start date

2014-01-06

Completion date

2032-12-31

Last updated

2022-05-02

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

Conditions

None listed

Brief summary

The primary purpose of this study is to provide long-term patient follow-up and review of clinical and correlative data outside of clinical trials. Who is it for? The registry will collect information on patients with a diagnosis of sickle cell disease, alpha-thalassemia, beta-thalassemia and other haemoglobinopathies. Study Details Treating clinicians at sites will identify patients and enrol them to the study. The following categories of data items will be collected to the Haemoglobinopathy database using a web portal: Demographic details Clinical presentation Laboratory results Therapy Complications (of therapy or condition) Outcomes It is hoped that the findings from this study will identify patterns of treatment and variation in outcomes, for survival and quality of life. Findings will be valuable in informing optimal treatment strategies.

Interventions

This is a patient Registry collecting information on patients with a diagnosis of sickle cell disease, alpha-thalassemia, beta-thalassemia and other haemoglobinopathies. Information will be collected by review of medical records for a period of twenty years.

Eligibility

Sex/Gender

All

Healthy volunteers

Inclusion criteria

Patients with a diagnosis of sickle cell disease, alpha-thalassemia, beta-thalassemia and other haemoglobinopathies.

Exclusion criteria

patients who have chosen to opt-off the registry.

Outcome results