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ISHLT iPHF REGISTRY Status and Update

ISHLT iPHF REGISTRY Status and Update. April 2017 Based on data as of March 15, 2017. 2017. Goals of the Registry.

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ISHLT iPHF REGISTRY Status and Update

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  1. ISHLT iPHFREGISTRYStatus and Update April 2017 Based on data as of March 15, 2017 2017

  2. Goals of the Registry • To collect and analyze clinically relevant data on pediatric heart failure patients in order to better understand the natural history and response to current and future disease treatment regimes. 2017

  3. Enrollment Overview • First patient enrolled: April 4, 2016 • 16 Centers • 81 patients 2017

  4. Participating Institutions (N=16) * Institutions enrolled as of March 15, 2017 2017

  5. In Progress • Boston Children’s • Cincinnati 2017

  6. Potential Centres(have expressed interest / been in contact) • Newcastle • Singapore • Rady Children’s (San Diego) • Arkansas • Washington • Kentucky • Utah • Delaware • Montefiore • Osaka, Japan • La Paz, Spain • Oslo, Norway • Michigan • ?Others? 2017

  7. Enrollment Activities • As of March 15, 2017 • Number of centers: 16 • Number of patients: 81 2017

  8. Age Distribution at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=81 2017

  9. Race Distribution at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=75 2017

  10. Gender Distribution at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=81 2017

  11. Weight Distribution at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=74 2017

  12. Diagnosis at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=81 2017

  13. Medical Condition at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=75 2017

  14. Life Support at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=75 2017

  15. Functional Status at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=73 2017

  16. Academic Progress at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=74 2017

  17. Academic Activity Level at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=73 2017

  18. Cognitive Development at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=72 2017

  19. Motor Development at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=72 2017

  20. LVEF at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=64 2017

  21. LVEDD at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=46 2017

  22. MR at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=71 2017

  23. Qualitative RV Function at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=71 2017

  24. Qualitative RV Size at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=71 2017

  25. Heart Catheterization at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=72 2017

  26. Creatinine at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=74 2017

  27. BNP at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=32 2017

  28. nt-pro BNP at Enrollment (Patients diagnosed during 1/1/2016 – 3/3/2017) N=28 2017

  29. Number of Hospitalizations (Patients diagnosed during 1/1/2016 – 3/3/2017) N=64 2017

  30. Reasons for Hospitalization (Patients diagnosed during 1/1/2016 – 3/3/2017) N=62 2017

  31. Length of First Hospitalization (Patients diagnosed during 1/1/2016 – 3/3/2017) N=61 2017

  32. Interventions Initiated on First Hospitalization * (Patients diagnosed during 1/1/2016 – 3/3/2017) N=60 * Only most common interventions are displayed; Patients may be reported with more than one intervention. 2017

  33. Outcomes of First Hospitalization (Patients diagnosed during 1/1/2016 – 3/3/2017) N=64 2017

  34. Why Participate? Benefits to Centers • Statistical summaries of hospital experience • Participate in heart failure research • Generate volume and trend data to facilitate short and long term manpower and financial planning 2017

  35. Why Participate? Benefits to pediatric heart failure community • Improved outcomes • Facilitate accelerated evaluation of new therapies (drugs and devices) • Development of international standards for pediatric heart failure 2017

  36. Challenges: IRB and Data Sharing Agreements • IRB • Templates online • Consents online – including Spanish consents • Some non-NA centers having challenges (e.g. Europe) • Data sharing agreement with UNOS • Draft online 2017

  37. Challenges: Data Entry • Feedback: Not difficult (data elements clear; web-based data entry very user friendly) • Time • Enrollment: 10-30 mins • Hospitalization form: 10-30 mins 2017

  38. Challenges: Data Entry • Human Resources*** • MD – fastest but workload and time • Clinical APN or RN – have knowledge base but workload and time • Research APN or RN • Research coordinator – education • Seems to be easiest if incorporated into patient care workflow 2017

  39. Why should we persist? • Funding – ISHLT • Infrastructure – The database • Collaboration – All of Us • Unique – there is no other way to get this data to address gaps in knowledge • Very Unique – merger projects with PEDIMACS/IMACS and the Transplant Registries (ISHLT, PHTS, and UNOS) 2017

  40. iPHFR Patient Destinations 2017

  41. Steering Committee • Anne Dipchand (Chair) • Richard Kirk • Chris Almond • Christina VanderPluym • Angela Lorts • Yuk Law • Elfi Pahl • Estela Azeka • Robert Gajarski • Scott Auerbach • Warren Zuckerman • Wida Cherikh (UNOS) 2017

  42. Institutional enrollment information available at... www.ishlt.org/registries 2017

  43. Questions? anne.dipchand@sickkids.ca 2017

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