Appendix B_SCDTDP Data Summit Participants

Appendix B_SCDTDP Data Summit Participants.docx

Sickle Cell Disease Treatment Demonstration Program - Quality Improvement Data Collection

Appendix B_SCDTDP Data Summit Participants

OMB: 0906-0019

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Appendix B: SCDTDP Data Summit Participants

SDCTDP Data Summit Participants

Organization

Contact Person

Role

E-mail

Boston Medical Center

William Adams, MD

Pediatrician, informatics researcher

Bill.Adams@bmc.org

Northeast Coordinating Center

Michele Ako

Research intern, pediatric hematology


Northeast Coordinating Center

Nina Anderson

Primary care provider

nina@tovacommunityhealth.org

SCDAA

Mary Brown

President & CEO of the Sickle Cell Disease Foundation of California

maryb@scdfc.org

NICHQ

Emily Clermont

Senior Project Manager


Northeast Coordinating Center

Alice Cohen

Hematologist

acohen@barnabashealth.org

Heartland Sickle Cell Disease Network

Ben Cooper

Data Manager

ben.cooper@wustl.edu

AHRQ

Denise Dougherty

Federal Partner

Denise.Dougherty@ahrq.hhs.gov

Emory University School of Medicine

Jim Eckman

Hematologist

jeckman@emory.edu


NICHQ

Patricia Finnerty

Improvement Advisor

pfinnerty@nichq.org

FDA

Jonathan Goldsmith

Federal Partner

Jonathan.Goldsmith@fda.hhs.gov


CDC

Althea Grant

Epidemiologist

ang4@CDC.GOV

The Johns Hopkins School of Medicine

Carlton Haywood

Epidemiologist, clinical researcher, patient with SCD

chaywoodjr@jhu.edu

NICHQ

Charlie Homer

Pediatrician, former CEO of NICHQ


CDC

Mary Hulihan

Health Sciences Researcher

ibx5@cdc.gov

Pacific Sickle Cell Regional Collaborative

Alan Ikeda

Pediatric Hematologist

aikeda@cure4thekids.org

HRSA

Donnell Ivy

Project Officer

eivy@hrsa.gov

Boston Medical Center

Trish Kavanagh

Pediatrician

Patricia.Kavanagh@bmc.org

Heartland Sickle Cell Disease Network

Allison King

Pediatric Hematologist

King_A@kids.wustl.edu

NHLBI

Norma Lerner

Federal Partner

norma.lerner@nih.gov

HRSA

Michael Lu

Associate Administrator, MCHB, HRSA

Michael.Lu@hrsa.hhs.gov

Sickle Cell Treatment and Outcomes Research in the Midwest (STORM)

Tammy Nordheim

Project Manager

Tamara.Nordheim@cchmc.org

Pacific Sickle Cell Regional Collaborative

Diane Nugent

Pediatric Hematologist

dianenugent7@gmail.com

NICHQ/ Children’s Hospital at Montefiore

Suzette Oyeku

Pediatrician, NCC Medical Director

soyeku@nichq.org


Pacific Sickle Cell Regional Collaborative

Susan Paulukonis

Epidemiologist

Susan.paulukonis@cdph.ca.gov

HRSA

Madelyn Reyes

Federal Partner

mreyes1@hrsa.gov

NIH

Yaffa Rubinstein

Federal Partner

Yaffa.Rubinstein@nih.gov

Sickle Cell Treatment and Outcomes Research in the Midwest (STORM)

Kay Saving

Pediatric Hematologist

kls@uicomp.uic.edu


HRSA

Joan Scott

Genetic Service Branch Chief, Division of Services for Children with Special Health Needs, Health Resources and Services Administration

JScott2@hrsa.gov

NICHQ

Avery Seefeld

Project Manager


Sickle Cell Treatment and Outcomes Research in the Midwest (STORM)

Lisa Shook

Health services researcher

Lisa.Shook@cchmc.org

The Children’s Hospital of Philadelphia

Kim Smith-Whitley

Pediatric hematologist


whitleyk@email.chop.edu

Northeast Coordinating Center

Rosalyn Stewart

Pediatrician

rstewart@jhmi.edu

HRSA

Bonnie Strickland

retired

retired

Northeast Coordinating Center

John Strouse

Pediatric hematologist


jstrous1@jhmi.edu

HRSA

Christina Turgel

Federal Partner

CTurgel@hrsa.gov

NICHQ

Kate Vaughan

Associate Director


FDA

Nicole Verdun

Federal Partner

nicole.verdun@fda.hhs.gov

NHLBI

Ellen Werner

Program Director at National Heart, Lung, and Blood Institute/NIH

wernere@nhlbi.nih.gov

Northeast Coordinating Center

Lauren Whiteman

Program Coordinator; Analyst

Lwhitem1@jhmi.edu



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