Sentences with phrase «international patient registry»

The first international patient registry has been launched for primary ciliary dyskinesia (PCD)-- a rare lung disease causing long - term and recurring respiratory infections, with no approved treatments and no cure.

Not exact matches

In addition, the registry contains standard procedural and diagnostic codes of the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD - 10), abstracted from patient records after discharge.

To tackle these questions, she recently opened an international registry to track Beckwith - Wiedemann patients and gather tissue samples.

In addition, the university's medical school maintained an international registry of Werner patients.

Enrollment in the registry began in February 2012 and includes patients from 111 international sites.

Utilising the RDRF, we have deployed national and international patient - driven and clinical registries including: the Myotubular and Centronuclear Myopathy Patient Registry, the Global Angelman Syndrome Registry, the Familial Hypercholesterolaemia Australasia Network Registry, and the Australian and New Zealand Neuromuscular Disorders Registries (Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Myotonic Dystrophy Regispatient - driven and clinical registries including: the Myotubular and Centronuclear Myopathy Patient Registry, the Global Angelman Syndrome Registry, the Familial Hypercholesterolaemia Australasia Network Registry, and the Australian and New Zealand Neuromuscular Disorders Registries (Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Myotonic Dystrophy Reregistries including: the Myotubular and Centronuclear Myopathy Patient Registry, the Global Angelman Syndrome Registry, the Familial Hypercholesterolaemia Australasia Network Registry, and the Australian and New Zealand Neuromuscular Disorders Registries (Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Myotonic Dystrophy RegisPatient Registry, the Global Angelman Syndrome Registry, the Familial Hypercholesterolaemia Australasia Network Registry, and the Australian and New Zealand Neuromuscular Disorders Registries (Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Myotonic Dystrophy ReRegistries (Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Myotonic Dystrophy RegistriesRegistries).

Another recent grant, awarded to Sandra Gollnick, PhD, Director of the Photodynamic Therapy Center, Member of the Department of Cell Stress Biology and Distinguished Professor in the Department of Immunology, will enable the creation of an international registry compiling information about patients» responses to photodynamic therapy (PDT), an approach developed at Roswell Park that is now used in the treatment of many lung, esophageal, head and neck, pancreatic, and mesothelioma tumors.