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Information for Clinicians/Researchers

Forms required for New IFAR Enrollments:

Consent for IFAR participation must be obtained by designated staff at Rockefeller University, University of Minnesota, Children's Hospital Cincinnati, or Memorial Sloan Kettering Cancer Center. If you are not at one of these centers please have the patient call our study coordinator at 212-327-8612 or email at fanconiregistry@rockefeller.edu for consenting purposes. If the help of an interpreter is needed to consent the family again please contact us to make these arrangements.

Release Forms (applicable forms needed for all new enrollments as well):

If you have any questions about the IFAR Enrollment Forms or Release Forms please contact Fanconi registry at 212-327-8612.

Specimen Collection Instructions and Requisition Forms:

If you have any questions about specimen collection please contact Agata Smogorzewska, Principal Investigator, at 212-327-7850.

Updates:

The knowledge produced from our study is only as good as the information we receive from you.  Thus regular updates are crucial.  If you can send a copy of your clinic note to us after each visit that would be very helpful.  It would also be very helpful to know about any major change in status such as transplant, serious illness, or death.  Lastly we have completed an Annual IFAR Update Form.  We will complete this as much as possible from the records sent, but may request completion of this form for more accurate patient information.  Thank you for your help with this!

Agreements:

If you have any questions about the usage agreement please contact Agata Smogorzewska, Principal Investigator, at 212-327-7850.

Forms required for New IFAR Enrollments:Consent for IFAR participation must be obtained by designated staff at Rockefeller University, University of Minnesota, Children's Hospital Cincinnati, or Me