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Fig. 1 | Orphanet Journal of Rare Diseases

Fig. 1

From: Methodological advances in patient-centered rare disease research: the UTHealth Houston Turner Syndrome Society of the United States research registry

Fig. 1

Structure of the Turner Syndrome Research Registry (TSRR). The flow diagram illustrates how surveys can be distributed from the UTHealth Houston REDCap registry to participants, and how self-reported data is returned to REDCap. The Turner Syndrome Society of United States (TSSUS) is the sole gatekeeper of participant information

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172