Resource Files
UCSF Alpha Thalassemia Major
Agenda
January 8th
(All times are Pacific Standard Time)
| 4:00 PM | Surviving with Joy - a short film |
| 4:10 PM | Welcome and overview - Day 1
Tippi MacKenzie, MD (UCSF) |
| 4:20 PM | Family Experience 1
Conversations with families about their diagnosis and treatment journeys |
| 4:50 PM | Lessons from Patient Registries Moderator: Ali Amid, MD |
| Canada Registry of ATM outcomes Ali Amid, MD (Children's Hospital of Eastern Ontario, University of Ottawa) | |
| Hong Kong Registry of ATM outcomes Wilson YK Chan, MBBS (Queen Mary Hospital, Hong Kong University) | |
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UCSF Registry - focus on neurological outcomes Marisa Schwab, MD, Billie Lianoglou, LCGC (UCSF) |
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| Meta-analysis of aggregated registry data Tachjaree Panchalee, MD (Siriraj Hospital, Mahidol University) |
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| Live Q&A | |
| 5:45 PM | BREAK |
| 5:50 PM | Prenatal Screening and Diagnosis Moderator: Mary Norton, MD |
| Genetic diagnosis of ATM John Waye, PhD (McMaster University) | |
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Prenatal thalassemia screening algorithm Mary Norton, MD (UCSF) |
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| Ultrasound diagnosis of hydrops Pornpimol Ruangvutilert, MD, PhD (Siriraj Hospital, Mahidol University) |
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| Live Q&A |
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| 6:35 PM | BREAK |
| 6:40 PM | Optimizing fetal therapy for ATM Introductions: Keith Ogasawara, MD |
| Managing pregnancies affected by ATM Juan González Velez, MD, PhD (UCSF) |
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| Adoption of IUT as a therapy for ATM in the State of Hawaii Keith Ogasawara, MD (Kaiser Permanente Hawaii) | |
| In utero transfusion protocol Greg Ryan, MB (Ontario Fetal Centre, University of Toronto) |
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| In utero hematopoietic stem cell transplantation - Phase 1 clinical trial Tippi MacKenzie, MD (UCSF) | |
| 7:15 PM | Live panel: Interdisciplinary discussion regarding prenatal care for ATM Moderator: Tippi MacKenzie, MD Juan González Velez, MD, PhD Roberta Keller, MD (UCSF) Keith Ogasawara, MD Greg Ryan, MB |
| 7:40 PM | Close Meeting Tippi MacKenzie, MD |
| 7:45 PM | ADJOURN |
January 9th
| 3:00 - 3:50 PM | Forum A: Specialists discuss IUT protocol consensus |
| 3:00 - 3:50 PM | Forum B: Building a patient-family group for ATM Moderator: Sandra Gilbert, PhD (Cooley's Anemia Foundation) This session is for patient/families living with ATM |
| 4:00 PM | Welcome and overview - Day 2 |
| 4:05 PM | Family Experience 2 Conversations with families living with ATM |
| 4:35 PM | Postnatal therapies for ATM Moderator: Vip Viprakasit, MD, DPhil |
| Postnatal transfusion protocols Elliott Vichinsky, MD (UCSF) | |
| Postnatal hematopoietic stem cell transplantation Alexis Thompson, MD, MPH (Lurie Children's Hospital of Chicago, Northwestern Feinberg School of Medicine) | |
| Transfusion and transplantation in Thailand Vip Viprakasit, MD, PhD (Siriraj Hospital, Mahidol University) | |
| 5:05 PM | Live panel: Interdisciplinary discussion regarding opportunities and challenges to providing postnatal care for ATM Moderator: Vip Viprakasit, MD, DPhil Supachai Ekwattanakit, MD, PhD (Siriraj Thalassemia Center, Mahidol University) Alexis Thompson, MD, MPH Elliott Vichinsky, MD |
| 5:30 PM | Thalassaemia International Federation (TIF) Michael Angastiniotis, MBChB |
| 5:35 PM | BREAK |
| 5:40 PM | Live Panel: Discussion with families and providers Introduction by Craig Butler, Executive Director, Cooley's Anemia Foundation Moderator: Barbara Koenig, PhD, Director, UCSF Bioethics Program Melanie Kirby-Allen, MD (Hospital for Sick Children) Billie Lianoglou, LCGC (UCSF) Mara Rosner, MD (Johns Hopkins Medicine) Family Representatives |
| 6:25 PM | Close Meeting Tippi MacKenzie, MD (UCSF) |
| 6:35 PM | ADJOURN |