Diabetic RetinaScreen (The National Diabetic Retinol Screening Programme)

Data Collection Type
National data collections of health and social care in Ireland
Organisation

National Screening Service.

Year established

2013 (national programme commenced),
2014 (annual screening).

Statement of purpose

The primary goal of the Diabetic RetinaScreen Programme is to reduce the risk of sight loss among people with diabetes by the early detection and treatment of sight –threatening retinopathy. The purpose of the database is to provide a population register containing demographic to identify eligible people for the purpose of screening. The database also contains clinical data in order that those who require treatment can be contacted for follow-up treatment and clinical referral recommendations.

Coverage (geographical and temporal)

National - for people diagnosed with Type 1 or Type 2 diabetes aged 12 years and over.
Children (aged 12 years and over) Women and Men who are diagnosed with Diabetes can be added to the register via two pathways: 1. Notification from their General Practitioner, Diabetologist, Ophthalmologist or Endocrinologist to the Programme. 2. Self register on-line, or by calling the Freephone line and forwarding to GP or Consultant for signature. Records will remain inactive a person has NPL in both eyes or until the person has deceased. (There is no age limit)

Description/Summary

Diabetic RetinaScreen maintains a population register containing demographic data of the eligible people diagnosed with Type 1 or Type 2 Diabetes aged 12 years and over for the purposes of call/recall annual screening. It also contains clinical data in order that those who require treatment can be contacted for follow-up treatment and clinical referral recommendations.

Data users

Internal stakeholders - NSS and Programme staff.

External stakeholders - Screening & Grading providers, database software providers, letter printing company, document scanning company, call management centre, DRS Ophthalmology clinics (clinical and administrative staff) and General Practitioners. Diabetes Ireland, Diabetes Programme HSE.

Data content

Client demographical data, Unique DRS ID Number, screening data grading outcome, clinical examination, further assessments/data on retinopathy detected; outcome of treatments/follow-up data. Appointment schedules. Approved Consent.

Data dictionary

Not available.

National-level identifier variables

PPSN for some participants.

Placeholder
in place for IHI when available.

Equity stratifiers

Place of residence.

Gender - data selected by default using gender by data providers.

Data collection methodology

Initially files were imported from PCRS. Data collection can be facilitated by self-registration and registration by health professionals, contacting the call centre.

Clinical coding scheme

Not in use.

Size of national collection

Approximately 200,000 people on the register, 170,000 of these have consented. Approximately 150,000 invited for screening.

Publication frequency

Bi-Annually.

Accessing data

Programme Statistical Report and data requests.

Open data portal access

No.

Telephone contact
Other comments

There are two providers contracted to invite screen and grade all consented participants including onward referral for treatment if needed. All screening outcomes are communicated back to participants GP or nominated Ophthalmologist/Endocrinologist. 8 Treatment clinics capture clinical information on those who have been referred for treatment.