Recommendations for Improving the Quality of Rare Disease Registries

Balancing the Optimal and the Feasible: A Practical Guide for Setting Up Patient Registries for the Collection of Real-World Data for Health Care Decision Making Based on Dutch Experiences

(2017) Saskia de Groot et al.   VALUE IN HEALTH

International Charter of principles for sharing bio-specimens and data

(2016) Deborah Mascalzoni et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

(2016) Sabina Gainotti et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Registry-based randomized controlled trials- what are the advantages, challenges, and areas for future research?

(2016) Guowei Li et al.   JOURNAL OF CLINICAL EPIDEMIOLOGY

The Quality of Rare Disease Registries: Evaluation and Characterization

(2016) Alessio Coi et al.   Public Health Genomics

The FAIR Guiding Principles for scientific data management and stewardship

(2016) Mark D. Wilkinson et al.   Scientific Data

Sharing and Reuse of Sensitive Data and Samples: Supporting Researchers in Identifying Ethical and Legal Requirements

(2015) Murat Sariyar et al.   BIOPRESERVATION AND BIOBANKING

Registry-based randomized clinical trials—a new clinical trial paradigm

(2015) Stefan James et al.   Nature Reviews Cardiology

Rare Disease Registries Classification and Characterization: A Data Mining Approach

(2015) Michele Santoro et al.   Public Health Genomics

Sharing and Reuse of Sensitive Data and Samples: Supporting Researchers in Identifying Ethical and Legal Requirements

(2015) Murat Sariyar et al.   Biopreservation and Biobanking

A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research

(2014) Rémy Choquet et al.   JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION

Commonly Used Data-collection Approaches in Clinical Research

(2013) Jane S. Saczynski et al.   AMERICAN JOURNAL OF MEDICINE

Patient participation as dialogue: setting research agendas

(2010) Tineke A. Abma et al.   HEALTH EXPECTATIONS

Study Design, Precision, and Validity in Observational Studies

(2009) Melissa D.A. Carlson et al.   JOURNAL OF PALLIATIVE MEDICINE

Registers needed for new interventional procedures

(2008) Georgios Lyratzopoulos et al.   LANCET