Sanford Health — Biomedical Watch V2

Traitements2programmes

Essais1liés

Publications2liées

SourceDBlocale

Traitements

2

Molécule	Indication / population	Phase	Objectif	Pays	Résultat
CoRDS — Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at SanfordCoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access. Visit sanfordresearch.org/CoRDS to enroll.	Myasthénie	À vérifier	À vérifier	United States, Australia	À vérifier
CoRDS — Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at SanfordCoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access. Visit sanfordresearch.org/CoRDS to enroll.	Myasthénie	À vérifier	À vérifier	United States, Australia	À vérifier

Essais cliniques

1

Molécule	Indication / population	Phase	NCT	Titre	Statut
CoRDS — Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford	Myasthénie	À vérifier	NCT01793168	CoRDS — Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford	RECRUITING

Publications

2

Molécule	Indication / population	Titre	Journal	Date
CoRDS — Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford		Natural history study of adults with Wolf-Hirschhorn syndrome 2: Patient-reported outcomes study.	American journal of medical genetics. Part A
CoRDS — Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford		Utilization of CoRDS registry to monitor quality of life in patients with VCP multisystem proteinopathy.	Orphanet journal of rare diseases