Résultats de la recherche - 10 results

Orphanet Belgium activities: January 2024 newsletter on Orphanet and OD4RD projects

Publication Type: Popular-science publication (vulgarising publication) Authors: Annabelle Calomme Source: Newsletter, Sciensano, Brussels, Belgium (2024) Keywords: OD4RD Orphanet Rare diseases ...

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: een portaal voor zeldzame ziekten

Publication Type: Popular-science publication (vulgarising publication) Authors: Elfriede Swinnen Source: Medi-Sfeer, Volume 420, Number 25, p.23- 25 (2013) ISBN: 1372-0600 Keywords: Inserm Orphanet ...

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 ...

General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey.

(ii) characteristics of one to three most recently seen patients. Rare diseases were matched against Orphanet (www.orpha.net). GP encounter frequency and patients’ age were compared to the total general ...

Présentation générale des activités d'Orphanet et des contributions possibles par les professionnels de la santé et le grand public à Orphanet Belgium

Keywords: Orphanet database Rare diseases Abstract: On February 27, 2019, the Orphanet Belgium team participated in the conference for all audiences “Belgian actions around rare diseases” organized by the ...

QR code

QR code for this page URL