10/31/2014. Much is unknown. What is npod? THE JDRF Network for the Pancreatic Organ Donor with Diabetes (npod):

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1 THE JDRF Network for the Pancreatic Organ Donor with Diabetes (npod): a biobank and a collaborative project about the pathogenesis of type 1 diabetes Alberto Pugliese, MD 23 rd ADA Annual Conference on Diabetes Mellitus October 31, 2014 Much is unknown Animal models do not allow addressing critical questions about key biological aspects that are unique to the human condition and could represent novel and human-specific therapeutic targets: 1) key phenotypic and functional features of autoreactive T and B cells, plus antigen specificity and T/B cell receptor sequences 2) viral infections, which could be averted by vaccination if responsible viruses were identified and isolated 3) pathways of ß-cell regeneration, which could be stimulated with drugs 4) additional pathogenic mechanisms What is npod? npod is the Network for Pancreatic Organ Donors with Diabetes ( npod is a not-for-profit tissue bank, funded by JDRF, to obtain pancreas and other tissues from organ donors with diabetes in support of research about human type 1 diabetes npod is an open, collaborative research project based on data sharing npod is a data cloud resource 1

2 The JDRF npod Mission Obtain tissues from organ donors with T1D (diagnosed or sub-clinical) Distribute tissues to approved research projects (~140 since 2007) Mark Atkinson, PhD University of Florida Executive Director Alberto Pugliese, MD University of Miami Executive Co-Director Promote tissue and data sharing, collaboration, manage project interactions Promote a comprehensive understanding of human T1D and identify new therapeutic targets Important Features of npod npod offers the opportunity to: study contemporary patients, at different disease stages compare data from multiple tissues in individual & across cases coordinate the study of shared samples conduct collaborative science with real-time data sharing benefit from cross-fertilization with other working groups and investigators within the npod cloud, who examine other aspects of T1D pathogenesis develop collaborations with other initiatives npod includes a: multi-disciplinary teams and advanced methodologies cross-validation studies, including the study of control specimens, several ones contributed by the investigators themselves, which will lead to the generation of new and validated resources 2

3 Potential Organ Donor How npod works OPO TRANSPLANT Pancreas Transplant Recipients THIS IS WHERE YOU CAN HELP Investigators Apply with project T1D AAb+ T2D npod TPC Tissue Prioritization Committee RESEARCH npod Organs recovered npod OPPC Organ Processing & Pathology Core Organs processed & distributed npod-t npod Investigators & Working Groups Specimens distributed to approved investigators New data DataShare Publication New Therapies Why we need your help npod works with organ procurement organizations and tissue banks around the country to recover organ donations from people with type 1 diabetes. Though we have almost 300 cases, very few have diabetes for less than 7 years. Identifying new onset T1D cases is the key to finding a cure. The Challenge Thankfully, patients with type 1 diabetes rarely succumb to the complications of diabetes around the time of diagnosis However, some deaths still occur but these are rarely identified by organ procurement organizations (OPOs) Such cases are key to research about the immunological causes of type 1 diabetes, because the disease process is very active at this stage 3

4 How Can You Help Identify rare cases who may pass away at your institution, around the time of diagnosis and up to 7 years from the onset of type 1 diabetes Refer these deaths to your local OPO and ask staff to help recover tissues for npod Recover pancreata from research consented donors with your local OPO, tissue program, or Medical Examiner Refer: Timing is Critical Brain dead organ donors are cross-clamped and tissue recovery occurs within a few hours. Then it takes an additional 8-15 hours to transport materials to npod Autopsy recoveries generally occur hours after time of death, with transport time added after that Thus, involve the OPO! This is the preferred recovery method whenever possible Research Consent must be Obtained from Next of Kin OPO consent form, or an autopsy consent form that indicates the family is willing to donate to research All deaths are reported to organ procurement organizations, so it is critical to involve the OPO or hospital staff. OPO have professional staff that can talk to the family members and offer consent If organ donation is not possible, please call npod to discuss ways to recover 4

5 Identify, Refer, Recover New Onset T1D Organ Donors We hope those with newly diagnosed T1D never pass away from disease complications. But if they do, every single human pancreas recovered for research advances science and brings us closer to a cure for type 1 diabetes. WE NEED YOUR HELP! Please contact Jayne Moraski (jmoraski@ufl.edu) Or call