To Participate in the Bloom’s Syndrome Registry
To express interest in participating in the Registry, a person with BSyn (or, on his behalf, his parents, physician, or geneticist) may provide the following to one of the registrars: (i) a brief clinical case history; (ii) the laboratory evidence that confirms the diagnosis; and, (iii) an indication of the means by which the Registry can expect to learn of the clinical progress of the affected person (e.g., growth, general health, health problems).
Federal government-required “informed consent” forms are available to persons who choose to participate in the Registry. The clinical investigation, including the consent forms, is approved by the Institutional Review Board of Weill Cornell Medical College.
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