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.
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.
All ages.
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.
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.
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).
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.
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.
Category: Eyes
Certification level: 2
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