Connect® MDS/AML Disease Registry



Status:Recruiting
Conditions:Blood Cancer, Blood Cancer, Blood Cancer, Blood Cancer, Hematology
Therapuetic Areas:Hematology, Oncology
Healthy:No
Age Range:18 - Any
Updated:10/27/2018
Start Date:December 12, 2013
End Date:December 12, 2028
Contact:Melissa Nifenecker
Email:connectmdsaml-registry@celgene.com
Phone:908-219-0809

Use our guide to learn which trials are right for you!

Connect® MDS/AML: The Myelodysplastic Syndromes (MDS) and Acute Myeloid Leukemia (AML) Disease Registry

The purpose of the Connect® MDS/AML Disease Registry is to provide unique insights into
treatment regimens and sequencing of these regimens as they relate to clinical outcomes of
patients with newly diagnosed MDS, ICUS or AML in routine clinical practice and evaluate
molecular and cellular markers that may provide further prognostic classification and/or
might be predictive of therapy outcomes.

This Disease Registry will collect data on patient characteristics, treatment patterns and
clinical outcomes. The objective is to describe how newly diagnosed MDS, ICUS or AML patients
are treated; and to build a knowledge base regarding the effectiveness and safety of
front-line and subsequent treatment regimens in both community and academic settings.
Enrolled patients will receive treatment and evaluations for MDS, ICUS or AML according to
the standard of care and routine clinical practice at each study site. All treatments that
patients receive for MDS, ICUS or AML will be recorded, including initial treatment and any
subsequent therapy. Data on treatment outcomes, including response rates as measured by the
treating physician, evidence of progression, survival, and patient-reported outcomes will be
collected quarterly on the electronic CRF.

Inclusion Criteria:

- Patients must be able to provide written informed consent

- Newly diagnosed (confirmed diagnosis within 60 days prior to date of informed consent
signature), primary or secondary Myelodysplastic Syndromes (MDS), or Acute Myeloid
Leukemia (AML), or Idiopathic Cytopenia of Undetermined Significance (ICUS)

- Disease diagnosis confirmed by Central Eligibility Review

- AML patients must be at least 55 years of age at the time of informed consent
signature

- MDS/ICUS patients must be at least 18 years of age at the time of informed consent
signature

- Patients must be willing and able to complete enrollment and follow-up HRQoL
instruments, for which patients must be proficient in either English or Spanish

Exclusion Criteria:

- Suspected or proven acute promyelocytic leukemia (APL) (FAB M3 or WHO 2008) based on
morphology, immunophenotype, molecular assay or karyotype

- MDS, AML or ICUS cohort assignment by Central Eligibility Review is not confirmed by
site

- For MDS and ICUS patients: receiving active (disease modifying) treatment** prior to
ICF date (Supportive care such as transfusions, antibiotics, iron chelators, EPO,
growth factors (G-CSF/GM-CSF) is allowed)

- For AML patients: receiving active (disease modifying) treatment** that had been
initiated for more than 2 weeks (14 days) prior to ICF date (Supportive care, such as,
transfusions, antibiotics, iron chelators, EPO, growth factors (G-CSF/GM-CSF), tumor
lysis prophylaxis allowed)
We found this trial at
217
sites
Chicago, Illinois 60612
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Chicago, IL
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201 Dowman Dr
Atlanta, Georgia 30303
(404) 727-6123
Emory University Emory University, recognized internationally for its outstanding liberal artscolleges, graduate and professional schools,...
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Atlanta, GA
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4725 North Federal Highway
Fort Lauderdale, Florida 33308
(954) 771-8000
Holy Cross Hospital While spirituality plays an essential role in the way that we minister...
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Fort Lauderdale, FL
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6405 N Federal Hwy # 300
Fort Lauderdale, Florida 33308
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Fort Lauderdale, FL
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200 North Park Street
Kalamazoo, Michigan 49007
(269) 382-2500
West Michigan Cancer Center In 1994, Borgess Health Alliance and Bronson Healthcare Group opened the...
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Kalamazoo, MI
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701 Doctors Dr
Kinston, North Carolina 28504
(252) 559-2200
Kinston Medical Specialists offers comprehensive medical services for all ages. Whether it’s a case of...
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Kinston, NC
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2220 Pierce Ave
Nashville, Tennessee 37232
615-936-8422
Vanderbilt-Ingram Cancer Center The Vanderbilt-Ingram Cancer Center, located in Nashville, Tenn., brings together the clinical...
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Nashville, TN
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850 Century Medical Drive
Titusville, Florida 32796
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Titusville, FL
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40 Sunshine Cottage Road
Valhalla, New York 10595
(914) 594-4000
New York Medical College The College was founded in 1860 by a group of New...
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Valhalla, NY
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Winter Haven, Florida 33880
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Winter Haven, FL
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Abilene, Texas 79601
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Abilene, TX
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Akron, Ohio 44304
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Akron, OH
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Albany, Georgia 31701
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Albany, GA
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1500 Wallace Boulevard
Amarillo, Texas 79015
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Amarillo, TX
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1000 South Coulter Street
Amarillo, Texas 79106
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Amarillo, TX
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Ames, Iowa 50010
McFarland Clinic, PC It has been over 65 years since the founders of McFarland Clinic...
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Ames, IA
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Anderson, IN
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Ashland, Kentucky 41101
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Atlanta, GA
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Augusta, GA
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1 VA Center
Augusta, Minnesota 04330
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Baltimore, MD
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Baton Rouge, LA
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4950 Essen Ln
Baton Rouge, Louisiana 70809
(225) 767-0847
Mary Bird Perkins Cancer Center - Baton Rouge Mary Bird Perkins Cancer Center (MBPCC) and...
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Baton Rouge, LA
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Bayamon,
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Bellingham, Washington 98225
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Bellingham, WA
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Berkeley, CA
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Berkeley, California 94704
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Berkeley, CA
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6410 Rockledge Dr #660
Bethesda, Maryland 20817
(301) 571-0019
Center for Cancer & Blood Disorders Widely recognized for its compassionate, expert care, the Center...
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Bethesda, MD
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801 North 29th Street
Billings, Montana 59107
406-238-2500
Billings Clinic Based in Billings, Montana, Billings Clinic is a community-governed health care organization consisting...
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Billings, MT
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Billings, Montana 59102
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Bloomington, Indiana
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Bloomington, IN
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1055 N Curtis Rd
Boise, Idaho 83706
(208) 367-2121
Saint Alphonsus Regional Medical Center Saint Alphonsus Health System is a four-hospital regional, faith-based Catholic...
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Boise, ID
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Bolivar, Missouri 65613
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Bolivar, MO
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450 Brookline Ave
Boston, Massachusetts 2215
617-632-3000
Dana-Farber Cancer Institute Since it’s founding in 1947, Dana-Farber has been committed to providing adults...
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Boston, MA
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Boynton Beach, Florida 33426
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Boynton Beach, FL
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Bronx, NY
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Bronx, NY
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Brooklyn, New York 11220
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Brunswick, Georgia 31520
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Brunswick, GA
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Canton, OH
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789 Mt Auburn Rd
Cape Girardeau, Missouri 63703
(573) 519-4725
Southeast Cancer Center SoutheastHEALTH is a far-reaching network of providers and facilities including Southeast Hospital...
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Cape Girardeau, MO
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Charleston, South Carolina 29403
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Charleston, SC
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Cheyenne, WY
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Chicago, IL
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Christiana, Delaware 19702
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Christiana, DE
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Cincinnati, Ohio 45220
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Cincinnati, OH
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Cleveland, OH
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2049 E 100th St
Cleveland, Ohio 44106
(216) 444-2200
Cleveland Clinic Foundation The Cleveland Clinic (formally known as The Cleveland Clinic Foundation) is a...
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Cleveland, OH
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Columbia, Maryland 21044
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Columbia, MD
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1600 East Broadway
Columbia, Michigan 65201
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Columbus, Georgia 31904
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Columbus, GA
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Columbus, OH
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Concord, California 94520
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Concord, CA
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Cooperstown, New York 13326
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Cooperstown, NY
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Corpus Christi, Texas 78405
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Corpus Christi, TX
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Corpus Christi, Texas 78463
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Corpus Christi, TX
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Corvallis, Oregon 97330
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Corvallis, OR
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Covington, LA
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Cumberland, Maryland 21502
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Cumberland, MD
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7777 Forest Lane
Dallas, Texas 75230
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Dallas, TX
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4500 S. Lancaster Rd.
Dallas, Texas 75216
800-849-3597
Dallas VA Medical Center VA North Texas Health Care System (VANTHCS) is a progressive health...
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Dallas, TX
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Daytona Beach, Florida 32114
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Dearborn, Michigan 48124
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Dearborn, MI
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Denver, CO
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Detroit, Michigan 48202
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Detroit, MI
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4646 John R Street
Detroit, Michigan 48201
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Drexel Hill, Pennsylvania 19026
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Drexel Hill, PA
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Duluth, MN
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Dunmore, Pennsylvania 18512
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Dunmore, PA
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East Syracuse, New York 13057
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East Syracuse, NY
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Edina, Minnesota 55432
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Edina, MN
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350 Engle St
Englewood, New Jersey 07631
(201) 894-3000
Englewood Hospital and Medical Center Englewood Hospital was incorporated in 1888 as a non-profit, non-sectarian...
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Englewood, NJ
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Evanston, Illinois 60201
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Evanston, IL
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1717 13th St
Everett, Washington 98201
(425) 297-5500
Providence Regional Cancer Partnership Founded in 2007, the Providence Regional Cancer Partnership is the result...
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Everett, WA
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Farmington Hills, Michigan 48334
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Farmington Hills, MI
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Fayetteville, Arkansas 72703
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Fayetteville, AR
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302 Kensington Ave
Flint, Michigan 48503
(810) 762-8490
Genesys Hurley Cancer Institute Bringing the most advanced cancer treatment services, technologies and programs available...
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Flint, MI
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1600 S Andrews Ave
Fort Lauderdale, Florida 33316
(954) 355-4400
Broward Health Medical Center Broward Health, providing service for more than 75 years, is a...
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5700 North Federal Highway
Fort Lauderdale, Florida 33308
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Fort Smith, Arkansas 72903
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Fort Smith, AR
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Fountain Valley, California 92708
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Fountain Valley, CA
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2615 East Clinton Avenue
Fresno, California 93703
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Fresno, CA
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Gainesville, Florida 32608
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Gainesville, FL
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706 Holiday Drive
Galveston, Texas 77573
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Galveston, TX
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Glens Falls, NY
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Grand Rapids, MI
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Green Bay, Wisconsin 54301
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Green Bay, WI
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744 South Webster Avenue
Green Bay, Wisconsin 54313
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Green Bay, WI
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Greenbrae, California 94904
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Greenbrae, CA
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Greenville, North Carolina 27834
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Greenville, NC
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Greenville, South Carolina 29615
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Greenville, SC
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19229 Mack Avenue
Grosse Pointe Woods, Michigan 48236
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Grosse Pointe Woods, MI
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Hackensack, NJ
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1 Ingalls Dr
Harvey, Illinois 60426
(708) 333-2300
Ingalls Memorial Hospital As the area's only independent not-for-profit healthcare system, Ingalls has the ability...
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Harvey, IL
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Hattiesburg, Mississippi 39401
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Hattiesburg, MS
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40 South Clay Street
Hinsdale, Illinois 60521
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Hinsdale, IL
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Hot Springs, Arkansas 71913
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Hot Springs, AR
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Huntington Station, New York 11746
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Huntington Station, NY
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Huntsville, AL
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