Search results - 12 results
Orphanet Belgium Team, Highlights in 2024
Publication Type: Scientific poster, presentation or proceeding Authors: Annabelle Calomme; Kim Van Roey Source: Orphanet International Annual Meeting, Orphanet, Issue Orphanet (2024) Health ...
Belgian contribution to Orphanet, the international reference portal on rare diseases and orphan drugs
Sciensano, Brussels, Belgium (2024) Keywords: Orphanet Rare diseases Health Topics: Weesziekten Maladies orphelines Orphan diseases Service: Étude des soins de santé Gezondheidszorgonderzoek Health services ...
A systematic review of studies that estimated the burden of chronic non-communicable rare diseases using disability-adjusted life years
Brecht Devleesschauwer; Juanita A. Haagsma Source: Orphanet Journal of Rare Diseases, Volume 19, Issue 1 (2024) Keywords: Disability-Adjusted Life Years methods population health Rare diseases REVIEW ...
Belgian rare diseases plan in clinical pathology: identification of key biochemical diagnostic tests and establishment of reference laboratories and financing conditions.
Vernelen; Coucke, Wim; Advisory Board of the Action 1 of the Belgian National Plan for Rare Diseases Source: Orphanet J Rare Dis, Volume 16, Issue 1 (2021) Keywords: Belgium budgets Diagnostic Tests, Routine ...
Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease.
Richard Roxburgh; Benedikt Schoser; Sonia Segovia; Andriy Shatillo; Simone Thiele; Ivailo Tournev; Baziel van Engelen; Stanislav Vohanka; Hanns Lochmüller Source: Orphanet J Rare Dis, Volume 13, Issue ...
What can the CF registry tell us about rare CFTR-mutations? A Belgian study.
Publication Type: Peer reviewed scientific article Authors: De Wachter, E; Muriel Thomas; Simeon Wanyama; Seneca, S; Malfroot, A Source: Orphanet J Rare Dis, Volume 12, Issue 1, p.142 (2017) ...
Identification of rare disease codes in ICD-9-CM and exploration of Belgian Minimal Hospital Data
methodology need ON Order Orphanet Patient questions Rare disease Rare diseases registration result results System Systems Term use Abstract: For financial reimbursement, Belgian hospitals need to comply with ...
The health and economic burden of haemophilia in Belgium: a rare, expensive and challenging disease
Orphanet J Rare Dis, Volume 9 (2014) Keywords: Belgium Blood Coagulation Factors Cohort Studies Cost of Illness Hemophilia A Humans Abstract: BACKGROUND: Haemophilia is a rare hereditary haemorrhagic disease ...
Orphanet België en nationaal register zeldzame ziekten
Publication Type: Scientific poster, presentation or proceeding Authors: Elfriede Swinnen Source: RaDiOrg Algemene Vergadering en Ledendag, NA, Issue RaDiOrg, NA (2013) Keywords: België EN Orphanet ...
Towards a central registry for rare disease patients in Belgium
implementation improve incidence Indicator Indicators IS IT LEVEL measure measures methodology Monitoring need needs Nomenclature ON orphan Orphanet Patient Patient Care patients Planning prevalence public Quality ...