TITLE SLIDE

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• A not-for-profit corporation founded in 1980 -
  funded by a core grant from NCRR (NIH) with
  supplementary funding from ORD, NIAID, NIDDK, NEI
  NIAMS

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NDRI MISSION

• Advancing the procurement, preservation and
  distribution of normal and diseased human tissues
  and organs for biomedical research
• More than 175,000 tissues served to over 3,000
  researchers nationwide
• More than 1,700 publications citing NDRI
• Overseen by IRB at University of Pennsylvania

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NDRI SOURCES
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RARE DISEASE INITIATIVE

• Total Tissues Procured 702
• Total Donors 115
• Unique Diseases Procured 62
• Approved Researchers 79
• Number of Diseases Requested 46
• Total Tissues Available in OBC 450

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MEETING RESEARCHERS REQUESTSFOR TISSUES

• Researcher-driven, customized protocols
• Age/race/gender
• Tissue type and procurement procedure
• Diseased or normal tissue, DNA cell lines
• Sample size
• Tissue preservation method (e.g. fresh, fixed,
  frozen, snap-frozen, paraffin or OCT block, media
  options)
• Time of death to preservation and/or delivery
• Contraindications (e.g. substance abuse, cancer
  with or without mets, radiation, medications,
  diseases, infections, ventilation etc.)

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NDRI Website Online Biospecimen Catalogue
http//www.inspiritec.org/ndri2/
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Focus on Collaborations with Voluntary Health
Organizations (VHOs)

• Researcher Services
• Management of the pool of researchers
• Identification and recruitment of new researchers
  and coordination of the application and approval
  process
• Development of procurement protocols
• Family/Donor Interface Management
• Development of donor awareness about NDRIs
  Private Donor Program
• Consultations with donors and donor families
• Obtaining informed consent

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Focus on Collaboration with VHOs

• Tissue Retrieval and Distribution Services
• Coordination of tissue procurement and shipment,
  using existing network (24/7 availability)
• Provision of dedicated storage, listing of banked
  tissues in NDRIs OBC
• Post-recovery Services and Donor Follow-up
• Acquisition and collation of additional clinical
  information from donors, donor families medical
  personnel
• Follow-up with donor family
• Maintenance of all donor data in a manner that is
  fully compatible with HIPAA regulations regarding
  the protection of patient confidentiality

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Focus on Collaboration with VHOs

• Promotional Materials
• Promotion of the NDRI-VHO collaboration on the
  NDRI website and in other literature, such as
  brochures, newsletters and conference exhibits
• Program Administration
• Provision of quarterly written reports
• Organization of meetings, as appropriate, to
  review progress

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PRIVATE DONOR PROGRAM

• A Unique Opportunity
• NDRI provides individuals suffering from rare
  diseases with the opportunity to donate their
  organs and tissues directly for medical research
  either during routine surgical procedures or
  after death
• Sensitivity and Peace of Mind
• All donations are coordinated by an NDRI staff
  member with experience in working with families
  and individuals affected by loss of a loved one
• All post-mortem recoveries are performed by a
  qualified professional, with utmost care and
  respect
• All aspects of donation are arranged by NDRI,
  with no cost to the individual or family for
  donation

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NDRI Website Rare Disease Page
http//www.ndriresource.org/html/spec_rare.htm
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Rare Disease Brochure (outside)
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SUPPLEMETARY SLIDES
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RESEARCHER PROJECTS- EXAMPLES

• Pathogenic mechanism of spinocerebellar ataxia
  type 2
• Vaso-occlusive processes in sickle cell
  retinopathy
• A molecular analysis of Goodpasture syndrome
• T Cells in the pathogenesis of systemic sclerosis
• The possible neuropathology underlying Tourette
  syndrome an immunohistochemical study of the
  striatopallidal projection system
• Gene expression profiling of the Kveim Siltzbach
  test
• Human neural precursor cell lines derived from
  genetic
• disorders of neurodevelopment

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PIVATE DONOR PROGRAM

• Register With NDRIs Rare Disease Program
• Request our information packet to learn about the
  donation process
• Complete the consent form and medical history
  questionnaire.
• For post mortem donations, be sure to speak with
  your loved ones to ensure that they know of your
  wish to donate, and how to contact NDRI
• Surgical Procedures
• Speak with an NDRI coordinator about your
  upcoming surgery
• An NDRI coordinator will work with you and your
  medical team to ensure that tissues removed
  during your surgery are preserved and used for
  research purposes
• Donation After Death
• A family member must contact NDRI prior to or
  immediately after the donors death
• NDRI will evaluate the patients history to
  determine suitability for research. If patient
  is a candidate, an NDRI coordinator will arrange
  a timely donation
• After donation, the donor will be returned to the
  care of the family. Donation is compatible with
  a viewing or other traditional funeral
  arrangements

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NDRI Website Application Download
http//www.ndriresource.org/html/applications.htm
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Rare Disease Brochure (inside)