Clinical sequelae and pathophysiology of rare congenital hemolytic anemias

Completed

• Conditions: congenital anemia; hereditary anemia; 10018911; 10005330

• Registration Number: NL-OMON42799
• Lead Sponsor: Van Creveldkliniek UMC Utrecht

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Last Update Posted: 11 June 2024

Recruitment & Eligibility

• Status: Completed
• Sex: Not specified
• Target Recruitment: 100

Inclusion Criteria

Adult patients, 18 years or older with biochemically or genetically diagnosed rare congenital hemolytic anemia

Exclusion Criteria

Inability to give informed consent

Study & Design

• Study Type: Observational invasive
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
<p>To create insight in current disease burden by creating a descriptive cohort of<br /><br>patients, diagnosed with rare congenital hemolytic anemia. Study parameters are:<br /><br>- Prevalence and incidence of disease, based on chart review<br /><br>- Quality of life, based on questionnaires EuroQol-5D-5L and FACT-An<br /><br>- Prevalence and incidence of iron overload, based on chart review<br /><br>- Prevalence and incidence of comorbidities and related silent organ damage,<br /><br>based on chart review<br /><br>- Prevalence and incidence of splenectomy and complications, based on chart<br /><br>review</p><br>