Associated Registries
The Macula Register
| Registry Manager |
Inger Westborg |
| Steering group |
Ingrid Johansson, Gunilla Bjärnhall, Niklas Karlsson, Inger Westborg, Susanne Albrecht |
| Address |
The Macula Register
EyeNet Sweden
Blekinge Hospital
SE- 37185 KARLSKRONA
SWEDEN
|
| Website |
www.eyenetsweden.se
|
The purpose of the Macula Register is to provide a uniform national follow-up and quality assurance of the treatment of wet macular degeneration, AMD, which is the leading cause of severe visual loss in people older than 50 years in developed countries in the world.
In the year 2000 photodynamic therapy with Visudyne (PDT) was introduced in Sweden for treatment of wet AMD. In 2006 and 2007 new methods of treatment with intravitreal injections of vascular growth factor inhibitors (anti-VEGF treatment) were introduced.
The treatments are resource demanding and expensive.
The Macula Register started in 2003 and was web based in 2008.
The register gives medical measurements of the treatment such as change in visual acuity, frequency of treatment per patient, sort of treatment, side effects and result of treatment related to sub-diagnosis of macular degeneration.
Registration is made at the first treatment visit and then at all follow-up visits and subsequent treatment visits.
The register contains the following variables: diagnosis, gender, age, duration of symptom, visual acuity (distance and near), kind of macular degeneration, kind of treatment and side effects.
The feed-back of data will be made through regular standard reports at the web page and through a separate annual report. Feed-back to the participating clinics is also given at the common user-meetings twice a year.