Consensus on the criteria needed for creating a rare-disease patient registry. A Delphi study

RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research

(2014) Rachel Thompson et al.   JOURNAL OF GENERAL INTERNAL MEDICINE

National Rare Disease Registries: overview from Spain

(2014) M de la Paz et al.   Orphanet Journal of Rare Diseases

The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry

(2014) Laura Viviani et al.   Orphanet Journal of Rare Diseases

The European Union Policy in the Field of Rare Diseases

(2014) A. Montserrat Moliner et al.   Public Health Genomics

The Current Situation and Needs of Rare Disease Registries in Europe

(2014) D. Taruscio et al.   Public Health Genomics

Determination of French influenza outbreaks periods between 1985 and 2011 through a web-based Delphi method

(2013) Marion Debin et al.   BMC Medical Informatics and Decision Making

Methodology of clinical research in rare diseases: Development of a research program in juvenile neuronal ceroid lipofuscinosis (JNCL) via creation of a patient registry and collaboration with patient advocates

(2013) Elisabeth A. de Blieck et al.   Contemporary Clinical Trials

Factors associated with FEV1 decline in cystic fibrosis: analysis of the ECFS Patient Registry

(2013) E. Kerem et al.   EUROPEAN RESPIRATORY JOURNAL

Testing the feasibility of a National Spina Bifida Patient Registry

(2012) Judy K. Thibadeau et al.   BIRTH DEFECTS RESEARCH PART A-CLINICAL AND MOLECULAR TERATOLOGY

Development of an international internet-based neurofibromatosis Type 1 Patient registry

(2012) Kimberly J. Johnson et al.   Contemporary Clinical Trials

Tasas de respuesta a tres estudios de opinión realizados mediante cuestionarios en línea en el ámbito sanitario

(2012) Nicole Aerny Perreten et al.   Gaceta Sanitaria

Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB)

(2010) Yaffa R. Rubinstein et al.   Contemporary Clinical Trials

The case for a global rare-diseases registry

(2010) Christopher B Forrest et al.   LANCET

Registries for Robust Evidence

(2009) Nancy A. Dreyer   JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION

Categorizing the world of registries

(2008) Brian C. Drolet et al.   JOURNAL OF BIOMEDICAL INFORMATICS

Review article: Use of renal registry data for research, health-care planning and quality improvement: What can we learn from registry data in the Asia-Pacific region?

(2008) TECK-ONN LIM et al.   NEPHROLOGY