National Quality Registry for Macula

• Registry Manager: Blekinge County Council
• Registry Centre - affiliation: Registry Centre South
• Start year: 2008
• Classifications used: Does not use any classification. Membrane type according to classification
• This registry contains data on: Pharmaceuticals, Diagnoses, Interventions, Specialised Outpatient Care, PROM or other patient-reported health effects, Follow-up Data 3-5 months after the case is registered in the registry, 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 Swedish Macula Register is a National Quality Registry for monitoring the treatment of exudative macular degeneration (choroidal neovascularisation, CNV, under the macula in the retina). The registry was started in 2003 and went online in 2008.

Population

The aim of the registry is for all units treating exudative macular degeneration to report on their activities, thus enabling the reporting of results relating to age group, sex, type of lesion, treatment and consultation frequency, and results (visual acuity changes) for each treating unit/county.

The objective is for all treatment of exudative macular degeneration to be registered and become a common basis for analysing even the treatment results of rarer lesions. All consultations are conducted in specialised outpatient care clinics.

Ages in the registry

All ages.

Total volume of registry

Duration 1 January 2007 to 31 December 2015. Number of patients: 22,101, Number of eyes registered: 25,876. There were 375,164 consultations registered in the Macula Registry, of which 193,226 were for treatment.

Volume over the past operating year

For 2015, the Swedish Macula Registry had a total of 46,359 treatments registered and 11,938 patients had been in for consultation (of which a certain number had presumably not needed any injection at all during the year). Of the treatments provided, 99 percent were anti-VEGF injections.

The number of patients treated and intravitreal injections have increased each year. Approximately 12,000 patients per year and about 45,000 injection treatments per year.

Coverage rate

For 2014, the Swedish Macula Registry had a coverage of about 79 percent of the total number of patients compared with the National Patient Register (PAR).

References on validations

A validation study of registered data was started in 2012-2013. For randomly selected patients, registry data was compared to data in the patient medical records. The following variables were included in the validation survey: best corrected visual acuity (ETDRS); best corrected visual acuity (Snellen); near visual acuity; type of intravitreal drug given; occurrence of treatment-requiring adverse events; number of intravitreal injections given. Any discrepancy between registry data and data in hospital records was noted and the type of discrepancy was analyzed.

Overall, the number of discrepancies was low and register data were considered reliable.

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

List of variables

Baseline characteristics

Date for contact /referral to ophthalmic care

Diagnose, type of CNV

Sex

Age

Duration of symptoms

Visual acuity (VA)

Reading ability

Treatment

Pharmaceuticals

Treatment alogarithm

Number of treatments

Adverse events

Change in visual acuity

Reason for terminating treatment

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