Research comes up in 106 articles

A patient registry is a collection of standardized information about a group of patients who share a condition.

The information may be used for a variety of purposes such as conducting natural history studies and supporting syndrome-specific clinical trial recruitment.

A natural history study is a study designed to track the course of a syndrome over time.

A natural history study can also show the differences in symptoms and changes over time that are seen in different people with the same syndrome.

Institutional Review Board (IRB) An Institutional Review Board, for the purpose of protecting your/the Study Participant's rights, has reviewed this registry.

For questions about your rights as a Study Participant in this Registry or to discuss other study-related concerns or complaints with someone who is not part of this Registry team, you may contact North Star Review Board.

The 17q12 Patient Registry serves the chromosome 17q12 deletion and duplication syndromes community.

The 17q12 Patient Registry creates a platform for patients around the world to strengthen their voices and share information about chromosome 17q12 deletion and duplication syndromes, that impacts individuals differently; such as, kidney abnormalities, MODY5 (diabetes), neurodevelopmental disorders, seizures, and heart defects.

Chromosome 17q12 Deletion and Duplication Syndromes Patient Registry (17q12 Patient Registry) The 17q12 Patient Registry serves the chromosome 17q12 deletion and duplication syndromes community.

For Researchers Drive Research This is a unique rare disease patient registry.

Chromosome 17q12 Deletion and Duplication Syndromes Patient Registry (17q12 Patient Registry) The 17q12 Patient Registry serves the chromosome 17q12 deletion and duplication syndromes community.

For Researchers Drive Research This is a unique rare disease patient registry.