Sickle Cell Outcome REsearch

Sickle Cell Outcome REsearch - SCORE

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON55241

Enrollment

1000

Registered

2019-09-13

Start date

2019-10-07

Completion date

Unknown

Last updated

2024-04-15

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

Conditions

Sickel cell Anemia Sickle cell Disease

Interventions

None listed

Eligibility

Inclusion criteria

Inclusion criteria: - A diagnosis of SCD of any genotype; - Written patient (and in case of a patient

Exclusion criteria

Exclusion criteria: - Any medical or social reason, which obstructs or inhibits study participation according to treating physician - Intrekking van (ouderlijke) toestemming

Design outcomes

Primary

Measure	Time frame
1. To describe the natural course of disease e.g. symptoms and complications, growth, psychosocial and neurocognitive development, socioeconomic and demographic characteristics of children and adults with SCD; 2. To identify (molecular) genetic and epigenetic, biological, demographic and psychological and therapeutic determinants for morbidity and mortality in children and adults with SCD; 3. To investigate the long-term effects of current and future therapies on SCD symptoms and complications, preservation of organ function, growth, psychosocial and neurocognitive development in children and adults with SCD. 4. To evaluate and improve aspects of care of children and adults with SCD by measurement of patient-reported outcomes (PROs) and patient reported experiences (PREs) and analyses of associations with health care outcome.	—

Measure

Time frame

1. To describe the natural course of disease e.g. symptoms and complications, growth, psychosocial and neurocognitive development, socioeconomic and demographic characteristics of children and adults with SCD; 2. To identify (molecular) genetic and epigenetic, biological, demographic and psychological and therapeutic determinants for morbidity and mortality in children and adults with SCD; 3. To investigate the long-term effects of current and future therapies on SCD symptoms and complications, preservation of organ function, growth, psychosocial and neurocognitive development in children and adults with SCD. 4. To evaluate and improve aspects of care of children and adults with SCD by measurement of patient-reported outcomes (PROs) and patient reported experiences (PREs) and analyses of associations with health care outcome.

—

Secondary

Measure	Time frame
Not applicable.	—

Countries

Netherlands

Outcome results