UCSF CME Advances in Alpha Thalassemia Major:
No Longer a Fatal Disease 2021

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Overview Objectives Accreditation Course Outline
Chairs Faculty Travel & Lodging Cancellation Policy

Department: Medicine
Course Number: MMC21090
Activity Start Date: January 8, 2021, 4:00 pm -7:30 pm PST
Activity End Date: January 9, 2021, 3:00 pm -6:30 pm PST
Location: Live Stream - Interactive Webinar
Fees: $45
 

Overview:

Alpha thalassemia major (ATM) was once considered universally fatal in utero. If left untreated, a fetus with ATM will develop severe anemia and hydrops and will die before or shortly after birth. However, recent evidence has shown that when ATM is diagnosed early in pregnancy, in utero transfusions (IUTs) can reverse hydrops and enable survival with good neurological outcomes. Despite this evidence, widespread adoption of IUTs has not materialized for patients with ATM, though this procedure is commonly administered to treat other fetal conditions.

Two half-day sessions will focus on prenatal and postnatal care for ATM.

Prenatal topics include the natural history of ATM, ultrasound diagnosis, genetic diagnosis of ATM, management of pregnancies affected by ATM, and protocols for IUT.  We will hold a specific forum to outline best practices for prenatal management with IUT.  Clinicians from UCSF will give an update on the ongoing phase I clinical trial of in utero hematopoietic stem cell transplantation to treat ATM before birth.

Postnatal topics include protocols for chronic transfusions, bone marrow transplantation and complications of ATM management.

Participants will include clinicians, scientists, and families affected by ATM.

LIVE STREAM MEETING
This course will be offered as a live interactive virtual conference.  Login instructions along with the digital syllabus will be shared with attendees a week before the meeting.  Included in your registration fee is access to the course recordings on demand (available within a week after the conference) for any sessions that you miss, available for up to 30 days post-course.

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Objectives:

The goals of this conference are to:

  1. Demonstrate the impact of prenatal therapy on postnatal and long-term outcomes for alpha thalassemia major (ATM)
  2. Understand best practices for prenatal and postnatal treatment of ATM
  3. Bring together families affected by ATM to share their diagnosis and treatment journeys

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Accreditation:

The University of California, San Francisco School of Medicine (UCSF) is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

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Course Outline:

DAY 1, January 8, 2021  Pacific Standard Time/Date
4:00 PM Surviving with Joy – a short film
4:05 PM Welcome and overview – Day 1
Tippi MacKenzie, MD (UCSF)
4:15 PM Family Experience 1
Conversations with families about their diagnosis and treatment journeys
4:40 PM Lessons from Patient Registries
Moderator: Ali Amid, MD
Canada Registry of ATM outcomes
Ali Amid, MD (University of Ottawa)
UCSF Registry – focus on neurological outcomes
Marisa Schwab, MD, Billie Lianoglou, LCGC (UCSF)
Meta-analysis of aggregated registry data
Tachjaree Panchalee, MD (Siriraj Hospital, Mahidol University)
Live Q&A
5:25 PM BREAK
5:30 PM Prenatal Screening and Diagnosis
Moderator: Mary Norton, MD
Genetic diagnosis of ATM
John Waye, PhD (McMaster University Medical Centre, Hamilton Health Sciences)
Prenatal thalassemia screening algorithm
Mary Norton, MD  (UCSF)
Ultrasound diagnosis of hydrops
Pornpimol Ruangvutilert, MD, PhD (Siriraj Hospital, Mahidol University)
Live Q&A
6:15 PM BREAK
6:20 PM Optimizing fetal therapy for ATM
Moderator: Keith Ogasawara, MD
Managing pregnancies affected by ATM
Juan Gonzalez-Valez, MD, PhD  (UCSF)
Adoption of IUT as a therapy for ATM in the State of Hawaii
Keith Ogasawara, MD  (Kaiser Permanente Medical Center, Honolulu)
In utero transfusion protocol
Greg Ryan, MB  (Mount Sinai Hospital, University of Toronto)
In utero hematopoietic stem cell transplantation – Phase 1 clinical trial
Tippi MacKenzie, MD  (UCSF)
6:55 PM Live panel: Interdisciplinary discussion regarding prenatal care for ATM
Moderator: Juan Gonzalez-Valez, MD, PhD
7:25 PM Close Meeting
Tippi MacKenzie, MD (UCSF)
7:30 PM ADJOURN
DAY 2, January 9, 2021  Pacific Standard Time/Date
3:00 – Forum A: Specialists discuss IUT protocol consensus
3:50 PM Moderator:  Juan Gonzalez-Valez, MD, PhD  (UCSF)
  Zoom details will be sent to meeting registrants
3:00 – Forum B: Building a Patient-Family Group for ATM
3:50 PM Moderator: Sandra Gilbert, PhD  (Cooley’s Anemia Foundation)
  Zoom details will be sent to meeting registrants
4:00 PM Welcome and overview – Day 2
Tippi MacKenzie, MD (UCSF)
4:05 PM Family Experience 2
Conversations with families living lives affected by ATM
4:30 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  (Northwestern Feinberg School of Medicine)
Transfusion and transplantation in Thailand
Vip Viprakasit, MD, DPhil  (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
5:30 PM Thalassaemia International Federation (TIF)
5:35 PM BREAK
5:40 PM Live panel: Discussion with families and providers
Moderator:  Barbara Koenig, PhD, Director
UCSF Bioethics Program
Introduction by Craig Butler, Executive Director
Cooley’s Anemia Foundation
6:25 PM Close Meeting
Tippi MacKenzie, MD (UCSF)
6:35 PM ADJOURN

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Chairs:

Tippi MacKenzie, MD
Co-Director, Center for Maternal-Fetal Precision Medicine
UCSF Benioff Children’s Hospital
University of California, San Francisco

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Faculty:

Ali Amid, MD
University of Ottawa

Juan Gonzalez-Velez, MD, PhD
UCSF Benioff Children’s Hospitals

Barbara Koenig, PhD
University of California, San Francisco

Billie Lianoglou, LCGC
UCSF Benioff Children’s Hospitals

Mary Norton, MD
Co-Director, Center for Maternal-Fetal Precision Medicine
UCSF Benioff Children’s Hospitals

Keith Ogasawara, MD
Kaiser Permanente Hawaii

Greg Ryan, MB
Mount Sinai Hospital, Ontario Fetal Centre

Tachjaree Panchalee, MD
University of California, San Francisco
Siriraj Hospital, Mahidol University

Marisa Schwab, MD
UCSF Benioff Children’s Hospitals

Alexis Thompson, MD, MPH
Northwestern Feinberg School of Medicine

Elliott Vichinsky, MD
UCSF Benioff Children’s Hospitals

Vip Viprakasit, MD, DPhil
Siriraj Hospital, Mahidol University

John Waye, PhD
McMaster University, Hamilton Health Sciences

Pornpimol Ruangvutilert, MD, PhD
Siriraj Hospital, Mahidol University

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Travel & Lodging:

INTERACTIVE WEBINAR

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Cancellation Policy:

Cancellations received in writing before the first day of the course will be refunded. No refunds will be made on cancellations received after that date.

Please email your requests to RegEmail@ucsf.edu

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