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in the NAMDC Registry and biorepository and the oversight of those aspects of Consortium Studies that
are within the purview of an IRB. Columbia University, as the lead institution, is responsible for ensuring
that each NAMDC member site has IRB approval to participate in the NAMDC Patient Registry and
Biorepository. Columbia University maintains copies of all IRB approval notices from each member site. In
order to participate in the NAMDC Registry and Biorepository, patients must provide consent in writing by
signing the appropriate CU CIRB approved consent/assent form according to age. The NAMDC member
sites retain the original consent form, upload a copy to the NAMDC centralized database, and provide a full
copy to the patient for their records.

Consent for publication
Not applicable.

Copyright
© The Author(s) 2020.

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