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Establishing a consortium for the study of rare diseases: The Urea Cycle Disorders Consortium
- Publication Year :
- 2010
-
Abstract
- The Urea Cycle Disorders Consortium (UCDC) was created as part of a larger network established by the National Institutes of Health to study rare diseases. This paper reviews the UCDC’s accomplishments over the first six years, including how the Consortium was developed and organized, clinical research studies initiated, and the importance of creating partnerships with patient advocacy groups, philanthropic foundations and biotech and pharmaceutical companies.
- Subjects :
- medicine.medical_specialty
1303 Biochemistry
Urea cycle disorder
Endocrinology, Diabetes and Metabolism
MEDLINE
Alternative medicine
610 Medicine & health
Biochemistry
Patient advocacy
Article
Rare Diseases
Endocrinology
1311 Genetics
Genetics
medicine
1312 Molecular Biology
Humans
Longitudinal Studies
Registries
Cooperative Behavior
Urea Cycle Disorders, Inborn
Molecular Biology
business.industry
Extramural
medicine.disease
Biotechnology
1310 Endocrinology
2712 Endocrinology, Diabetes and Metabolism
Interinstitutional Relations
10036 Medical Clinic
Urea cycle
Family medicine
10076 Center for Integrative Human Physiology
570 Life sciences
biology
Cooperative behavior
business
Rare disease
Subjects
Details
- Language :
- English
- Database :
- OpenAIRE
- Accession number :
- edsair.doi.dedup.....964a327e723a57e25bfcb0a192c3396a