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| RDCRN Contact Registry ： ウィキペディア英語版 |
RDCRN Contact Registry
The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is an international patient contact registry sponsored by the National Institutes of Health. This registry collects basic data (i.e. contact information, diagnosis, medical history) to be stored in a secure, computerized database and used for the purpose of providing targeted information regarding a specific rare disease. Registrant information is not shared with anyone without the registrant’s permission and is stored in a secure, computerized database through the RDCRN’s Data Management and Coordinating Center (DMCC).
== Function ==
The RDCRN contact registry is utilized by rare disease researchers to identify and recruit patients who are eligible for participation in future research studies.〔(【引用サイトリンク】url=http://rarediseasesnetwork.epi.usf.edu/registry/index.htm )〕 The data is anonymously reported by patients or family members and they may also provide their contact information so that they may be notified in the case that the patient qualifies for participation in a research study. Additionally, patients receive updates on the progress of research projects in their rare disease of interest (such as site activations or protocol openings) from their rare disease consortium.
抄文引用元・出典: フリー百科事典『 ウィキペディア（Wikipedia）』
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