Sickle Cell Outcome REsearch
Recruiting
- Conditions
- Sickel cell AnemiaSickle cell Disease1001890210005330
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 1000
Inclusion Criteria
- A diagnosis of SCD of any genotype;
- Written patient (and in case of a patient <16 years of age, parental)
informed consent.
Exclusion Criteria
- Any medical or social reason, which obstructs or inhibits study participation
according to treating physician
- Intrekking van (ouderlijke) toestemming
Study & Design
- Study Type
- Observational invasive
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method <p>1. To describe the natural course of disease e.g. symptoms and complications,<br /><br>growth, psychosocial and neurocognitive development, socioeconomic and<br /><br>demographic characteristics of children and adults with SCD;<br /><br>2. To identify (molecular) genetic and epigenetic, biological, demographic and<br /><br>psychological and therapeutic determinants for morbidity and mortality in<br /><br>children and adults with SCD;<br /><br>3. To investigate the long-term effects of current and future therapies on SCD<br /><br>symptoms and complications, preservation of organ function, growth,<br /><br>psychosocial and neurocognitive development in children and adults with SCD.<br /><br>4. To evaluate and improve aspects of care of children and adults with SCD by<br /><br>measurement of patient-reported outcomes (PROs) and patient reported<br /><br>experiences (PREs) and analyses of associations with health care outcome. </p><br>
- Secondary Outcome Measures
Name Time Method <p>Not applicable.</p><br>