Search results - 8 results

Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease.

Miriam; Roxburgh, Richard; Schoser, Benedikt; Segovia, Sonia; Shatillo, Andriy; Thiele, Simone; Tournev, Ivailo; van Engelen, Baziel; Vohanka, Stanislav; Lochmüller, Hanns Source: Orphanet J Rare Dis, ...

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

health care HEALTH-CARE hospital hospital admission hospitals Human ICD identification identify INFORMATION Information system IS IT LEVEL List mapping methodology need ON Order Orphanet Patient questions ...

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: E. 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

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 Rare ...

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

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 practice population. ...

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 ...

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