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Repository
USIDNET
DNA and Cell Repository was established to provide a resource of
DNA and functional lymphoid cells obtained from rare patients with various primary immunodeficiency
diseases.
These disorders include patients with defects in T cell, B cell, and/or
granulocyte function as well as patients with abnormalities in immunoglobulins, complement and
other host defense mechanisms.
Coriell Institute
acts as USIDNET's Repository which will only
contain de-identified materials. USIDNET also operates a Patient Data Registry in
addition to the Repository and certain clinical data relating to a specific sample may be available
through the Registry for many of the patient samples in the Repository collection.
Health care professionals and other interested parties are encouraged to submit
samples to this Repository and to the related Patient Data Registry. There is no charge to
submit a sample to the Repository collection and prepaid mailers will be made available to
facilitate shipment of samples. Patient samples including blood, skin or lymphoid biopsies as
well as existing cell lines will be accepted.
The Repository will not have information allowing it to identify the donor of a
specific sample in its collections. However it is essential that submitters obtain
Informed Consent from the donor patient. A
Model Informed Consent
document approved by the Coriell Institutional Review Board (IRB)
has been prepared for those submitters who do not have an IRB at their local institution. A
completed
Sample Submission Form
must accompany each sample submitted to the Repository.
Submitters should contact the USIDNET Repository at Coriell to arrange sample shipment as well as
to obtain a unique identification number that will be assigned to each submitted
sample.
Materials in the collection are made available to qualified investigators in
academic and commercial organizations in an effort to stimulate research to increase understanding
and to promote development of new treatments for these orphan disorders. Requestors are
required to complete a
Statement of Research Intent
briefly describing their proposed use of materials obtained from the Repository. In
addition requestors must sign an
Assurance Form
agreeing to conditions established by USIDNET for distribution of samples from its
collection.
Requestors wishing to obtain additional clinical data specific to the samples in the
Repository collection must make a separate application for that information to the Registry by
calling
215-862-6374 ask for
R. Michael Blaese, MD
, Director, Medical Registries.
To obtain further information click
Coriell Institute for Medical Research
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