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Developing Best Practices for Data Sharing in Rare Disease Research

The RDCRN has developed principles and guidance to ensure that network research teams can effectively share data with others.

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Chart showing agreements among the RDCRN parties involved in data sharing.

Dystonia Over Time: What We’re Learning from a Natural History Study

June 26, 2024

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Dystonia Over Time: What We're Learning from a Natural History Study

Phenylketonuria Over Time: What We’re Learning from a Natural History Study

May 28, 2024

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Phenylketonuria Over Time: What We’re Learning from a Natural History Study

Phelan-McDermid Syndrome Over Time: What We’re Learning from a Natural History Study

April 25, 2024

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Phelan-McDermid Syndrome Over Time: What We’re Learning from a Natural History Study

Primary Ciliary Dyskinesia Over Time: What We’re Learning from Natural History Studies

March 25, 2024

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Primary Ciliary Dyskinesia Over Time: What We’re Learning from Natural History Studies

Severe Combined Immune Deficiency Over Time: What We’re Learning from Natural History Studies

December 12, 2023

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Severe Combined Immune Deficiency Over Time: What We’re Learning from Natural History Studies

Neonatal Enterovirus and Human Parechovirus Viral Sepsis Over Time: What We’re Learning from a Natural History Study

November 21, 2023

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Neonatal Enterovirus and Human Parechovirus Viral Sepsis Over Time: What We’re Learning from a Natural History Study

Urea Cycle Disorders Over Time: What We’re Learning from a Natural History Study

October 30, 2023

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Urea Cycle Disorders Over Time: What We’re Learning from a Natural History Study

Osteogenesis Imperfecta Over Time: What We’re Learning from a Natural History Study

September 22, 2023

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Osteogenesis Imperfecta Over Time: What We’re Learning from a Natural History Study