Participating HTCs
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Note: The HTCs acknowledged here reflect the regional structure and project organization in effect under cooperative agreement number U27DD0001155-02 from the Centers for Disease Control and Prevention (CDC) at the time the report was created. Centers in the Health Resources and Services Administration regions of New England and Southeast participate in Community Counts under regional subdivisions, as listed below.
Data for this report were collected by care providers in HTCs at the following institutions:
New England
Region I
Debra McNamara MSW
Stacy Croteau MD, MMS
Boston Hemophilia Center- Brigham and Women’s
Boston, MA
Boston Hemophilia Center- Children’s Hospital
Boston, MA
Connecticut Bleeding and Clotting Disorders Center
Hartford, CT
Dartmouth-Hitchcock Hemophilia Center
Lebanon, NH
Maine Medical Center
Scarborough, ME
New England Hemophilia Center
Worcester, MA
Rhode Island Hemostasis & Thrombosis Center
Providence, RI
Vermont Regional Hemophilia Center
Burlington, VT
Yale University School of Medicine
New Haven, CT
Region II
Susan L. Miller, MS
Christopher Walsh, MD
Hemophilia Center of Western New York
Buffalo, NY
Icahn School of Medicine at Mount Sinai
New York, NY
Long Island Jewish Medical Center
New Hyde Park, NY
Mary M. Gooley Hemophilia Center, Inc.
Rochester, NY
Montefiore Medical Center
Bronx, NY
Newark Beth Israel Medical Center
Newark, NJ
Puerto Rico Hemophilia Treatment Center
San Juan, PR
Rutgers, The State University, Robert Wood Johnson Medical School
New Brunswick, NJ
St. Michael’s Medical Center
Newark, NJ
SUNY Upstate Medical University-Pediatric Program
Syracuse, NY
The Joan & Sanford I Weill Medical College of Cornell University
New York, NY
The Regional Comprehensive Hemophilia & von Willebrand Treatment Center
Albany, NY
Mid-Atlantic
Region III
Lisa Maiale-Howell, MSS, LCSW
Regina Butler, RN
Cardeza Foundation Hemophilia Center
Philadelphia, PA
Charleston Area Medical Center
Charleston, WV
Children’s Hospital of Philadelphia
Philadelphia, PA
Children’s Hospital of the King’s Daughters
Norfolk, VA
Children’s National Medical Center
Washington, DC
Georgetown University Hospital
Washington, DC
Hemophilia and Thrombosis Center of Central Pennsylvania
Hershey, PA
Hemophilia Center of Western Pennsylvania
Pittsburgh, PA
Johns Hopkins University Medical Center
Baltimore, MD
Lehigh Valley Hospital-Muhlenberg
Bethlehem, PA
Penn Comprehensive Hemophilia and Thrombosis Program
Philadelphia, PA
St. Christopher’s Hospital for Children
Philadelphia, PA
University of Virginia Hospital
Charlottesville, VA
Virginia Commonwealth University
Richmond, VA
West Virginia University Medical Center
Morgantown, WV
Southeast
Region IV-N
Steve Humes, MM, MPH
Alice Ma, MD
East Carolina University
Greenville, NC
East Tennessee Comprehensive Hemophilia Center
Knoxville, TN
Palmetto Health Richland
Columbia, SC
St. Jude Children’s Research Hospital
Memphis, TN
University of Kentucky Hemophilia Treatment Center
Lexington, KY
University of Louisville Hemophilia Treatment Center
Louisville, KY
University of Louisville Physician’s Pediatric Cancer and Blood Disorders
Louisville, KY
University of North Carolina at Chapel Hill
Chapel Hill, NC
University of Tennessee – Memphis
Memphis, TN
Vanderbilt University Medical Center
Nashville, TN
Wake Forest University School of Medicine
Winston-Salem, NC
Region IV-S
Robert H. Gillespie, MSW, LCSW
Christine Kempton, MD
Augusta University Adult Hemophilia Treatment Center
Augusta, GA
Augusta University Pediatric Hemophilia Treatment Center
Augusta, GA
Children’s Hospital at Memorial University Medical Center
Savannah, GA
Children’s Rehabilitation Services- Birmingham Clinic
Birmingham, AL
Hemophilia of Georgia Center for Bleeding and Clotting Disorders of Emory, Adult Division
Atlanta, GA
Johns Hopkins All Children’s Hospital
St. Petersburg, FL
Nemours Children’s Clinic
Jacksonville, FL
St. Joseph’s Hospital Center for Bleeding and Clotting Disorders
Tampa, FL
University of Florida Hemophilia Treatment Center
Gainesville, FL
University of Miami Hemophilia Treatment Center Pediatrics and Adults
Miami, FL
University of Mississippi Medical Center Hemostasis and Thrombosis Center
Jackson, MS
University of South Florida
Tampa, FL
Great Lakes
Travis Tussing, JD
Roshni Kulkarni, MD
Susan Lerch
Akron Children’s Hospital
Akron, OH
Children’s Hospital of Michigan
Detroit, MI
Cincinnati Children’s Hospital Medical Center
Cincinnati, OH
Dayton Children’s Hemostasis and Thrombosis Center
Dayton, OH
Detroit Receiving Hospital
Detroit, MI
Eastern Michigan Hemophilia Treatment Center
Flint, MI
Helen DeVos Children’s Hospital
Grand Rapids, MI
Hemophilia Clinic of West Michigan Cancer Center
Kalamazoo, MI
Hemostasis and Thrombosis Center at University Hospitals of Cleveland
Cleveland, OH
Henry Ford Hospital Adult Hemophilia and Thrombosis Treatment Center
Detroit, MI
Indiana Hemophilia and Thrombosis Center
Indianapolis, IN
Michigan State University Center for Bleeding & Clotting Disorders
East Lansing, MI
Munson Medical Center Northern Regional Bleeding Disorder Center
Traverse City, MI
Nationwide Children’s Hospital Hemostasis and Thrombosis Center
Columbus, OH
Northwest Ohio Hemophilia Treatment Center
Toledo, OH
Ohio State University Medical Center
Columbus, OH
University of Cincinnati Medical Center
Cincinnati, OH
University of Michigan Hemophilia and Coagulation Disorders
Ann Arbor, MI
West Michigan Pediatric at Bronson
Kalamazoo, MI
Northern States
Kaveh Shabtaie, MPH
Danielle Leitner Baxter
Ann & Robert H. Lurie Children’s Hospital of Chicago
Chicago, IL
Bleeding & Clotting Disorders Institute
Peoria, IL
Children’s Hospitals & Clinics of Minnesota
Minneapolis, MN
Comprehensive Center for Bleeding Disorders
Milwaukee, WI
Gundersen Clinic
La Crosse, WI
Hemophilia Outreach Center
Green Bay, WI
Mayo Comprehensive Hemophilia Center
Rochester, MN
RUSH University Medical Center
Chicago, IL
Sanford Health Roger Maris Cancer Center
Fargo, ND
South Dakota Center for Blood Disorders
Sioux Falls, SD
University of Minnesota Health – Center for Bleeding and Clotting Disorders
Minneapolis, MN
University of Wisconsin – Madison Health Comprehensive Program for Bleeding Disorders
Madison, WI
Great Plains
John Drake, RN, MSN
Deborah Brown, MD
Arkansas Center for Bleeding Disorders
Little Rock, AR
Children’s Hospital of New Orleans
New Orleans, LA
Children’s Medical Center Bleeding and Thrombosis Program
Dallas, TX
Fort Worth Comprehensive Hemophilia Center
Ft. Worth, TX
Gulf States Hemophilia and Thrombophilia Center
Houston, TX
Kansas City Regional Hemophilia Center
Kansas City, MO
Louisiana Center for Bleeding and Clotting Disorders
New Orleans, LA
Missouri Hemophilia Treatment Center
Columbia, MO
Nebraska Regional Hemophilia Treatment Center
Omaha, NE
North Texas Comprehensive Hemophilia Center – Adult Program
Dallas, TX
Oklahoma Center for Bleeding and Clotting Disorders
Oklahoma City, OK
Saint Louis University Center for Bleeding and Thrombotic Disorders
St. Louis, MO
South Texas Comprehensive Hemophilia
San Antonio, TX
Texas Children’s Hemophilia and Thrombosis Center
Houston, TX
The John Bouhasin Center for Children with Bleeding Disorders
St. Louis, MO
University of Iowa Hospitals & Clinics
Iowa City, IA
Washington University Center for Bleeding and Blood Clotting Disorders-Adult Program
St. Louis, MO
Washington University Center for Bleeding and Blood Clotting Disorders-Pediatric Program
St. Louis, MO
Mountain States
Susan Lattimore, RN
Michael Recht, MD, PhD
Arizona Hemophilia and Thrombosis Center at Phoenix Children’s Hospital
Phoenix, AZ
Arizona Hemophilia and Thrombosis Center at the University of Arizona
Tucson, AZ
Bleeding Disorders Center of Alaska
Anchorage, AK
Providence Sacred Heart Children’s Hospital
Spokane, WA
Seattle Children’s Hospital
Seattle, WA
St. Luke’s Hemophilia Center
Boise, ID
Ted R. Montoya Hemophilia Program
Albuquerque, NM
The Hemophilia Center at Oregon Health & Science University
Portland, OR
University of Colorado Hemophilia and Thrombosis Center
Aurora, CO
Utah Center for Bleeding & Clotting Disorders at Primary Children’s Hospital
Salt Lake City, UT
Washington Center for Blood Disorders at Bloodworks Northwest d/b/a Puget Sound Blood Center
Seattle, WA
Western States
Judith Baker, DrPH, MHSA
Diane Nugent, MD
Center for Comprehensive Care and Diagnosis of Inherited Blood Disorders
Orange, CA
Children’s Hospital Los Angeles
Los Angeles, CA
City of Hope National Medical Center
Duarte, CA
Guam Comprehensive Hemophilia Care Program
Mangilao, GU
Hemophilia Treatment Center of Nevada
Las Vegas, NV
Kapi’olani Medical Center for Women and Children
Honolulu, HI
Orthopaedic Institute for Children
Los Angeles, CA
Rady Children’s Hospital San Diego
San Diego, CA
Stanford University Medical Center
Palo Alto, CA
University of California at Davis
Sacramento, CA
University of California San Francisco Hemophilia Comprehensive Care Program
San Francisco, CA
University of California San Francisco Benioff Children’s Hospital Oakland
Oakland, CA
University of California, San Diego
San Diego, CA
Valley Children’s Hospital
Madera, CA
Pages in this Report
- Highlights & Acknowledgements
- Background
- Methods
- Geographic Distribution of Registry Participants
- Diagnosis & Severity
- Registry Characteristics
- Age
- Race/Ethnicity
- Education
- Weight Status
- Health Insurance Coverage
- Viral and Vaccination History
- Healthcare Utilization and Absenteeism
- Family History and Genetic Mutation
- Complications
- Treatment
- Procedures and Comorbid Conditions
- Technical Notes
- ›Participating HTCs