National Quality Registry for Leukaemia

• Registry Manager: Region Skåne
• Registry Centre - affiliation: Regional Cancer Centre Syd:
• Start year: 2007
• Classifications used: SNOMED-3
• This registry contains data on: Pharmaceuticals, Diagnoses, Intervention, Primary Care, Inpatient Care, Specialized Outpatient Care, Risk Factors, Follow-up Data 6-11 months after the case is registered in the registry, Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

The Leukaemia Registry was founded in 2007 and is a National Quality Registry for adult patients with malignant diseases of the blood/lymph node. The registry consists of eight sub-registries:

• Lymphoma
• Acute lymphocytic (lymphoblastic) leukaemia (ALL)
• Chromic lymphocytic leukaemia (CLL)
• Acute myeloid leukaemia (AML)
• Chronic myeloid leukaemia (CML)
• Myeloma
• Myelodysplastic syndrome (MDS)
• Myeloproliferative neoplasms (MPN)

Population

The purpose of this registry is to contribute to increased knowledge about, and improved diagnostics and treatment for, malignant disorders of the blood and lymph nodes in Sweden.

Ages in the registry

The MPN registry includes all ages. The other registries register patients from 16 years of age who are treated at adult clinics.

Total volume of registry

About 3,700 adults a year develop one of these diseases. For all registries, there are several forms covering treatment, follow-up, transplantation, etc.

Coverage rate

Coverage rate for registration, year of diagnosis 2011. ALL 94 percent, AML 94 percent, CLL 87 percent, CML 92 percent, Lymphoma 89 percent, MPN 88 percent, MDS 92 percent, Myeloma 93 percent.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.