The future of neurological patient registries

Johnston, Megan; Pringsheim, Tamara

doi:10.2217/cpr.14.35

Search citation statements

Order By: Relevance

Paper Sections

Select...

Future Prospects Of Registries1

Introduction1

Citation Types

Supporting

Mentioning

Contrasting

Year Published

2017

2021

Publication Types

Select...

Article2

Relationship

Self Cite0

Independent2

Authors

Journals

Cited by 2 publications

(2 citation statements)

References 40 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The number of patient registries will continue to rise in the near future [21]. Their importance was shown in many areas including general practice [22], neurology [23,24], orthopedics [25,26], and oncology [27,28].…”

Section: Future Prospects Of Registriesmentioning

confidence: 99%

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

et al. 2017

View full text Add to dashboard Cite

show abstract

Section: Future Prospects Of Registriesmentioning

confidence: 99%

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

et al. 2017

View full text Add to dashboard Cite

show abstract

“…Rare disease registry platforms enable research to generate real-world evidence (RWE) to evaluate outcome measures, natural history of disease, and standards of care, as well as facilitating clinical trial feasibility evaluations [ 4, 5 ].…”

Section: Introductionmentioning

confidence: 99%

The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry

Hodgkinson

Lounsberry

M’Dahoma

et al. 2021

JND

View full text Add to dashboard Cite

We report the recruitment activities and outcomes of a multi-disease neuromuscular patient registry in Canada. The Canadian Neuromuscular Disease Registry (CNDR) registers individuals across Canada with a confirmed diagnosis of a neuromuscular disease. Diagnosis and contact information are collected across all diseases and detailed prospective data is collected for 5 specific diseases: Amyotrophic Lateral Sclerosis (ALS), Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM), Limb Girdle Muscular Dystrophy (LGMD), and Spinal Muscular Atrophy (SMA). Since 2010, the CNDR has registered 4306 patients (1154 pediatric and 3148 adult) with 91 different neuromuscular diagnoses and has facilitated 125 projects (73 academic, 3 not-for-profit, 3 government, and 46 commercial) using registry data. In conclusion, the CNDR is an effective and productive pan-neuromuscular registry that has successfully facilitated a substantial number of studies over the past 10 years.

show abstract

The future of neurological patient registries

Cited by 2 publications

References 40 publications

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

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

The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry

Contact Info

Product

Resources

About