Agenda 8:00pm Welcome Marc Richmond / Elfi Pahl 8:10pm Steering Committee Report Marc Richmond 8:20pm DCC Update James Kirklin / Nick Timkovich 8:40pm Database Committee Report Jennifer Conway 8:55pm Quality of Life Update Karen Uzark 9:00pm Foundation Update Craig Collum 9:10pm Scientific Committee Report Elfi Pahl 9:20pm Enduring Hearts Bob Boucek 9:25pm New Foundation Officers Melanie Everitt 9:30pm Adjourn

Nov. 2017-Nov. 2019 Database Committee Jennifer Conway, MD Chair Heather Tinling, BSN, RN Non Physician Rep. Rachel Ryan, BSN, RN Non Physician Rep. Kurt Schumacher, MD, MS Member at Large William Jeff Dreyer, MD Member at Large Jacob Simmonds, MD Member at Large Aamir Jeewa, MD Member at Large

Infection Form Mapping 2018 Activities Infection Form Mapping New list of answer options to be displayed under Surgical Therapy (previously a free text) Under final review

Infection Form Mapping 2018 Activities Infection Form Mapping New list of answer options to be displayed under Significant Long Term Sequelae (previously a free text) Answer categories include Kidney Consequences Neurological Consequences Respiratory Consequences GI Consequences PTLD Consequences Will go live in 2019

Post Transplant Annual Follow-up Form 2018 Activities Post Transplant Annual Follow-up Form Finalized list of medication options (previous a free text) Will go live in 2019 Medication entry guidelines: We are no longer categorizing medications by indication of use as intent is very difficult to assess and some medications may be used for multiple indications and have multiple effects despite intended use for only one indication or another New Medication Categories: Cardiovascular Anti-Hyperlipidemics Anticoagulants Anti-Infectives Endocrine GI Neuro/Psych Pulmonary Supplements Immunosuppressants Bone Marrow Stimulant Other

Cause of Death: Other, Specify 2018 Activities Cause of Death: Other, Specify Review of several hundred free text entries Committee reviewing mapping and expanding cause of death answer options Will go live in WBDE system in 2019 Once live, existing free text entries will automatically be mapped to new options where appropriate

2018 Activities: WBDE Clinical Summary

2019 Committee Goals Continued Form Review Review how medical history is captured at time of listing Review Renal Transplant / Dialysis data collection Continued review of ‘other, specify’ free text entries