1. Celiac Disease in Malta Thomas M Attard MD FAAP FACG

2. The Picture of Celiac Disease in Malta The national picture of Celiac Disease in Malta The composition of the Malta Celiac National Task Force The diagnostic guidelines in Malta Training and dissemination in Malta

3. The national picture - Rough Epidemiology Extrapolation based on international prevalence estimates 1:133*; 412,970**, 3,105 cases in the Maltese Islands Estimate based on individuals on Gluten Free Diet benefits through Dept. of Health: 786 individuals Dx with CD Frequency of celiac association membership (250) compared with Europe data: 1:2377***; 1:1651 * Fasano, et al, Arch of Intern Med, Volume 163: 286-292, 200 ** NSO Malta, 2010 *** A. Catassi, A. Fasano. Curr Gastroenterol Rep 2002;4:238 ‑ 243.

4. Distribution of Celiac Disease by Region of the Maltese Islands Population Distribution by Region of Malta (Source: NSO Office 2010) Celiac Patient Distribution by Region of Malta (Source: Free Drugs Entitlement Office 2010)

5. Regional Differences in the Distribution of Celiac Disease in Malta Significant underrepresentation of celiac disease in the Harbour Area of Malta and a relative underrepresentation in the Gozo – Comino Area There are many potential reasons for these observations

6. Reasons for observed inequity in the distribution of Celiac Cases by region True difference in the incidence based on environmental and genetic factors Administrative / bureaucratic misassignment of regional attributes Difference in case recognition based on health resource utilization Differences in health resource utilization based on socioeconomic factors incl. disease awareness

7. Malta National Celiac Task Force Contacts with Societies etc. Adult / Internal Medicine: Dr Mario Vassallo Celiac Association: Chairperson Mary Rose Caruana, Chairperson / AOECS President Prof. C Scerri Ministry of Health: (Malcolm Vella Haber)

8. The Diagnostic Guidelines for Celiac Disease in Malta Serology: all antibody testing available free of charge if requested through Gvmt Health Services (anti-gliadin, EMA, anti-tTG IgA, IgG) ‘Celiac screen’ includes anti-tTG IgA / IgG Difficulty routinely obtaining total serum IgA SOC endoscopy: duodenal / jejunal biopsy/ies to confirm serologic Dx Variable wait period for endoscopy – Bx (6 – 9 months in Gvmt Health Service)

9. The New Diagnostic Guidelines for CD in Malta Inconsistency in serologic testing modalities Risk of clerical error Biopsy confirmation still standard of care Difficulty in assigning lifelong Dx / dietary limitations without (perceived) certainty of biopsy Difficulty understanding 'severe' symptoms

10. Training and dissemination in Malta Efforts directed toward general population –Appearances on TV programs Bongu (Feb. 2011) and Healthy Living (Jan. 2011) Efforts directed toward Malta Celiac Association –Lecture / interactive talk (Nov 2011) Efforts directed toward junior trainee doctors –Foundation Program Didactic Lecture: Celiac Disease Dec 2010 Efforts directed toward specialist care-providers –Malta Pediatric Association Meeting: Update on Celiac Disease (Nov 2010) Efforts directed toward general medical community –Article Update on Celiac Disease – Synapse Medical Journal (Mar 2011), talk 1 st Malta Gastroenterology Meeting (Oct 2010)

11. Dissemination efforts: observations General population: lack of awareness of disease in general / disease in children Association members: lack of awareness need to regularly screen relatives / genetics Healthcare workers: lack of awareness of non-gastrointestinal / atypical presentations, more recent serology testing, duration of the disease

12. The Retrospective Study as Applied to Malta Inclusion of anonimized data still requires ethical review Difficulty identifying patients based on either endoscopy / histology findings, serologic screening results / entitlement to free drugs – need for prospective provider- based (pediatric) registry Average dx (Attard TM) ~ 2 / mo ? other providers / ? referral patterns