The National Myelodysplastic Syndromes (MDS) Study



Status:Recruiting
Conditions:Blood Cancer, Blood Cancer
Therapuetic Areas:Oncology
Healthy:No
Age Range:18 - Any
Updated:2/2/2018
Start Date:April 2016
End Date:September 2021
Contact:Chuck Wagner
Email:mdscontact@emmes.com

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The National Myelodysplastic Syndromes Natural History Study

Multi-center study enrolling patients suspected or newly diagnosed with myelodysplastic
syndromes (MDS), myelodysplastic syndromes/myeloproliferative neoplasms (MDS/MPN) overlap
disorder, or idiopathic cytopenia of undetermined significance (ICUS). Participants will be
followed long term. Clinical data, blood, and tissue samples will be collected to establish a
biorepository to facilitate the study of the natural history of MDS.

Multi-center, prospective cohort study enrolling patients from centers in the National Cancer
Institute (NCI) National Clinical Trials Network (NCTN) and NCI Community Oncology Research
Program (NCORP). The accrual period is 5+ years. After central pathology review of registered
participants, approximately 2,000 cases of MDS or MDS/MPN overlap disorders, and 500 cases of
ICUS will be identified for the longitudinal study cohort and up to 1000 cases will be
identified for the cross-sectional cohort. No more than 3500 total participants will be
registered. Participants in the longitudinal cohort may be followed for life.

The goal of the National MDS Study is to establish a publicly available resource to
facilitate the study of MDS natural history. This will be accomplished through: 1) Creation
of a multi-institutional, longitudinal collection of consistently processed and clinically
well-annotated blood and tissue specimens collected prospectively from participants with MDS
and participants with idiopathic cytopenia of undetermined significance (ICUS); and 2)
Support for investigator-initiated studies of MDS that will have high-impact for MDS
patients, including basic science, clinical, health outcomes and epidemiological research.

Inclusion Criteria:

- Suspected (e.g., persistent unexplained cytopenia, circulating peripheral blasts etc.)
MDS or MDS/MPN overlap disorders and undergoing diagnostic work-up with planned bone
marrow assessments, or diagnosed with de novo or therapy-related MDS within 6-months
of enrollment per the World Health Organization (WHO) criteria1 and undergoing
clinical evaluation and planned bone marrow assessments to confirm MDS or to evaluate
disease status

- Bone marrow aspirate expected to be performed within 1 week of registration, and in
all cases must be performed no later than 4 weeks after enrollment

- Age 18 or older

- B12 level, serum folate, ferritin, and Thyroid-Stimulating Hormone (TSH) tests
performed in prior 6 months

Exclusion Criteria:

- Prior treatment for MDS at entry and through the time of the entry bone marrow
aspirate

- Treatment with hematopoietic growth factors in prior 6 months

- Diagnosis of a solid tumor or hematologic malignancy within two years prior to
enrollment except for in situ cancer of the skin (basal or squamous cell), cervix,
bladder, breast, or prostate

- Treatment with radiation therapy in the two years prior to registration

- Non-hormonal treatment for malignancy within the two years prior to registration

- Established hereditary bone marrow failure syndrome

- Known primary diagnosis of aplastic anemia, classical paroxysmal nocturnal
hemoglobinuria, amegakaryocytic thrombocytopenic purpura, or large granular lymphocyte
leukemia

- Enrolled in the Connect® MDS/AML Disease Registry (NCT01688011)
We found this trial at
176
sites
1301 Punchbowl St
Honolulu, Hawaii 96813
(808) 538-9011
Principal Investigator: Jeffrey L Berenberg, MD
Queen's Medical Center The Queen's Medical Center, located in downtown Honolulu, Hawaii, is a private,...
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1201 Camino de Salud Northeast
Albuquerque, New Mexico 87131
(505) 272-4946
Principal Investigator: Steven Eberhardt, MD
University of New Mexico Cancer Center It’s been 40 years since the New Mexico State...
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666 Elm Street
Buffalo, New York 14263
(716) 845-2300
Principal Investigator: James Thompson, MD
Roswell Park Cancer Institute Welcome to Roswell Park Cancer Institute (RPCI), America's first cancer center...
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200 North Park Street
Kalamazoo, Michigan 49007
(269) 382-2500
Principal Investigator: Raymond Lord, MD
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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300 Community Drive
Manhasset, New York 11030
(516) 562-0100
Principal Investigator: Vincent Vinciguerra, MD
North Shore University Hospital North Shore-LIJ Health System includes 16 award-winning hospitals and nearly 400...
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3181 Southwest Sam Jackson Park Road
Portland, Oregon 97239
503 494-8311
Principal Investigator: Kim-Hien Dao, Do, PhD
Oregon Health and Science University In 1887, the inaugural class of the University of Oregon...
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1000 36th Street
Vero Beach, Florida 32960
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Aberdeen, South Dakota 57401
Principal Investigator: Vinod Parameswaran, MD
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1 Akron General Ave
Akron, Ohio 44307
(330) 344-6000
Principal Investigator: Esther Hoogland Rehmus, MD
Akron General Medical Center It
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Anaheim, California 92806
Principal Investigator: Louis Fehrenbacher, MD
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5301 McAuley Drive
Ann Arbor, Michigan 48197
734-712-3456
Principal Investigator: Tareq Al Baghdadi, MD
Saint Joseph Mercy Hospital St. Joseph Mercy Ann Arbor Hospital is a 537-bed teaching hospital...
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Auburn, Washington 98001
Principal Investigator: John A Keech, DO
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Austin, Texas 78701
Principal Investigator: Alka Mallik, MD
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Baldwin Park, California 91706
Principal Investigator: Louis Fehrenbacher, MD
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401 North Broadway
Baltimore, Maryland 21287
410-955-5000
Principal Investigator: Amy DeZern, MD
Johns Hopkins University-Sidney Kimmel Cancer Center The name Johns Hopkins has become synonymous with excellence...
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Bel Air, Maryland 21014
Principal Investigator: Ashkan Bahrani, MD
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Bellflower, California 90706
Principal Investigator: Louis Fehrenbacher, MD
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Bemidji, Minnesota 56601
Principal Investigator: Preston D Steen, MD
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300 N. Seventh St.
Bismarck, North Dakota 58501
(701) 323-6000
Principal Investigator: Preston Steen, MD
Sanford Bismarck Medical Center Whether your stay in our hospital is one day for same...
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1505 Eastland Drive
Bloomington, Illinois 61701
309-662-2102
Principal Investigator: James Lloyd Wade, MD, FACP, FASCO
Illinois CancerCare-Bloomington Illinois CancerCare, P.C. is a comprehensive practice treating patients withcancer andblood diseases. Our...
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915 Highland Blvd
Bozeman, Montana 59715
(406) 414-5000
Principal Investigator: Benjamin Marchello, MD
Bozeman Deaconess Hospital Bozeman Deaconess Hospital is a Joint Commission certified, licensed Level III trauma...
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Bronx, New York 10467
Principal Investigator: Joseph Sparano, MD
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Bronx, New York 10461
Principal Investigator: Joseph Sparano, MD
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4802 10th Ave
Brooklyn, New York 11219
(718) 283-6000
Maimonides Medical Center At 103 years old, Maimonides Medical Center remains a vital and thriving...
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Burlington, Wisconsin 53105
Principal Investigator: Thomas Saphner, MD, FACP
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Burlington, WI
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211 Saint Francis Drive
Cape Girardeau, Missouri 63703
573-331-3000
Principal Investigator: James Lloyd Wade, MD
Saint Francis Medical Center Saint Francis Medical Center is a 282-bed facility serving more than...
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Carbondale, Illinois 62902
Principal Investigator: James Lloyd Wade, MD
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Carterville, Illinois 62918
Principal Investigator: James Lloyd Wade, MD, FACP
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Cedar Rapids, Iowa 52403
Principal Investigator: Deborah W Wilbur, MD
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Centralia, Illinois 62801
Principal Investigator: James Lloyd Wade, MD
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Centralia, IL
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505 S Plummer Ave
Chanute, Kansas 66720
(620) 431-7580
Principal Investigator: Shaker Dakhil, MD
Cancer Center of Kansas, PA - Chanute Dr. H.E. Hynes founded Cancer Center of Kansas,...
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Charleston, West Virginia 25304
Principal Investigator: Steven James Jubelirer, MD
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2049 E 100th St
Cleveland, Ohio 44106
(216) 444-2200
Principal Investigator: Aaron Gerds, MD
Cleveland Clinic Foundation The Cleveland Clinic (formally known as The Cleveland Clinic Foundation) is a...
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2500 Metrohealth Dr
Cleveland, Ohio 44109
(216) 778-7800
Principal Investigator: Bruce Averbrook, MD
MetroHealth Med Ctr The MetroHealth System is one of the largest, most comprehensive health care...
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4050 Coon Rapids Blvd NW
Coon Rapids, Minnesota 55433
(763) 236-6000
Principal Investigator: Joseph Leach, MD
Mercy Hospital Mercy Hospital, located in Coon Rapids, Minnesota, is a 271-bed non-profit hospital that...
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Danville, Illinois 61832
Principal Investigator: Kendrith Rowland, MD
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100 North Academy Avenue
Danville, Pennsylvania 17822
570-271-6211
Principal Investigator: Joseph Joe Lukose Vadakara, MD
Geisinger Medical Center Since 1915, Geisinger Medical Center has been known as the region’s resource...
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Danville, PA
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Decatur, Illinois 62526
Principal Investigator: James Lloyd Wade, MD
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2300 N Edward St
Decatur, Illinois 62526
(217) 876-8121
Principal Investigator: James Lloyd Wade, MD
Decatur Memorial Hospital An American flag bearing only 48 stars waved above Decatur Memorial Hospital...
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1200 Pleasant St
Des Moines, Iowa 50309
(515) 241-6212
Principal Investigator: Robert J Behrens, MD
Iowa Methodist Medical Center Iowa Methodist Medical Center was established in 1901 in a single...
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Des Moines, Iowa 50309
Principal Investigator: Robert J Behrens, MD
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Des Moines, Iowa 50309
Principal Investigator: Robert J Behrens, MD
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2020 Central Ave
Dodge City, Kansas 67801
(620) 227-2488
Principal Investigator: Shaker Dakhil, MD
Cancer Center of Kansas, PA - Dodge City Dr. H.E. Hynes founded Cancer Center of...
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Duluth, Minnesota 55805
Principal Investigator: Basem Said Goueli, MD, PhD
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Duluth, Minnesota 55805
Principal Investigator: Bret E.B. Friday, MD, PhD
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Duluth, Minnesota 55805
Principal Investigator: Bret E.B. Friday, MD, PhD
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Duluth, Minnesota 55805
Principal Investigator: Bret E.B. Friday, MD, PhD
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Durham, North Carolina 27705
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Easley, South Carolina 29640
Principal Investigator: Jeffrey K Giguere, MD
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East Lansing, Michigan 48824
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Easton, Pennsylvania 18042
Principal Investigator: Edith Peterson Mitchell, MD
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Effingham, Illinois 62401
Principal Investigator: Kendrith Rowland, MD
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Effingham, Illinois 62401
Principal Investigator: James Lloyd Wade, MD
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Elk Grove Village, Illinois 60007
Principal Investigator: Bruce Bank, MD
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Elmira, New York 14905
Principal Investigator: William T Muuse, MD, FACP
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Ephrata, Pennsylvania 17522
Principal Investigator: Amir Tabatabai, MD
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18200 Lorain Avenue
Fairview, Ohio 44111
Principal Investigator: Bruce Averbrook, MD
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Fargo, North Dakota 58122
Principal Investigator: Preston D Steen, MD
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2601 Broadway
Fargo, North Dakota 58102
(701) 234-2900
Principal Investigator: Preston D Steen, MD
Sanford Clinic North-Fargo Sanford Health is an integrated health system headquartered in the Dakotas and...
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801 Broadway
Fargo, North Dakota 58102
(701) 234-6175
Principal Investigator: Preston D Steen, MD
Sanford Medical Center-Fargo Sanford Medical Center Fargo is a major medical center that provides comprehensive,...
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Fontana, California 92335
Principal Investigator: Louis Fehrenbacher, MD
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Fontana, Wisconsin 54937
Principal Investigator: Thomas Saphner, MD, FACP
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Fort Scott, Kansas 66701
(620) 223-8589
Principal Investigator: Shaker Dakhil, MD
Cancer Center of Kansas - Fort Scott Dr. H.E. Hynes founded Cancer Center of Kansas,...
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550 Osborne Rd NE
Fridley, Minnesota 55432
(763) 236-5000
Principal Investigator: Joseph Leach, MD
Unity Hospital Unity Hospital is one of the Twin Cities
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3315 N Seminary St
Galesburg, Illinois 61401
309-344-9269
Principal Investigator: James Lloyd Wade, MD, FACP, FASCO
Illinois CancerCare - Galesburg Illinois CancerCare, P.C. is a comprehensive practice treating patients withcancer andblood...
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Germantown, Wisconsin 53022
Principal Investigator: Thomas Saphner, MD, FACP
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40 V-Twin Drive
Gettysburg, Pennsylvania 17325
(717) 339-2640
Principal Investigator: Amir Tabatabai, MD
Adams Cancer Center Every day across central Pennsylvania, the people of WellSpan Health work together...
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Gig Harbor, Washington 98335
Principal Investigator: John A Keech, DO
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Grafton, Wisconsin 53024
Principal Investigator: Thomas Saphner, MD, FACP
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100 Michigan St NE
Grand Rapids, Michigan 49503
(616) 391-1774
Principal Investigator: Kathleen Yost, MD
Spectrum Health at Butterworth Campus Butterworth Hospital is one of four facilities that make up...
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1117 29th St S
Great Falls, Montana 59405
(406) 771-7300
Principal Investigator: Benjamin Marchello, MD
Benefis Healthcare- Sletten Cancer Institute Benefis Hospitals has 516 beds at its two campuses (that...
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835 S Van Buren St
Green Bay, Wisconsin 54301
(920) 433-0111
Principal Investigator: Brian L Burnette, MD
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835 S. Van Buren St.
Green Bay, Wisconsin 54301
(920) 884-3135
Principal Investigator: Briane Leslie Burnette, MD
Green Bay Oncology at Saint Vincent Hospital We are one of a select few physician...
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1726 Shawano Ave.
Green Bay, Wisconsin 54303
(920) 884-3135
Principal Investigator: Brian Leslie Burnette, MD
Green Bay Oncology Limited at Saint Mary's Hospital We are one of a select few...
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1726 Shawano Ave
Green Bay, Wisconsin 54303
(920) 498-4200
Principal Investigator: Brian L Burnette, MD
Saint Mary's Hospital Our team of dedicated physicians, nurses and staff offer a broad spectrum...
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2845 Greenbrier Rd
Green Bay, Wisconsin 54311
(920) 288-8000
Principal Investigator: Thomas Saphner, MD, FACP
Aurora BayCare Medical Center Aurora BayCare Medical Center is a 167-bed, full-service hospital serving the...
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Greenville, South Carolina 29607
Principal Investigator: Robert Siegel, MD, FACP
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1 St. Francis Drive
Greenville, South Carolina 29601
864-255-1000
Principal Investigator: Robert Siegel, MD
Saint Francis Hospital This 245-bed, all-private-room facility is located near downtown Greenville, South Carolina. Formerly...
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Greenville, South Carolina 29615
Principal Investigator: Jeffrey Giguere, MD
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Greenville, South Carolina 29605
Principal Investigator: Jeffrey Giguere, MD
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Greenwood, South Carolina 29646
Principal Investigator: Majd Chahin, MD
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Greer, South Carolina 29650
Principal Investigator: Jeffrey Giguere, MD
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Harbor City, California 90710
Principal Investigator: Louis Fehrenbacher, MD
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Hazleton, Pennsylvania 18201
Principal Investigator: Joseph Joe Lukose Vadakara, MD
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1 Salt Creek Lane
Hinsdale, Illinois 60521
Principal Investigator: Donald Sweet, MD
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Honolulu, Hawaii 96813
Principal Investigator: Jeffrey L Berenberg, MD
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Honolulu, Hawaii 96813
Principal Investigator: Jeffrey L Berenberg, MD
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Honolulu, Hawaii 96813
Principal Investigator: Jeffrey L Berenberg, MD
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Honolulu, Hawaii 96817
Principal Investigator: Jeffrey L Berenberg, MD
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800 W. Laurel
Independence, Kansas 67301
620-331-4099
Principal Investigator: Shaker Dakhil, MD
Cancer Center of Kansas-Independence Dr. H.E. Hynes founded Cancer Center of Kansas, P. A. in...
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Independence, Ohio 44131
Principal Investigator: Bruce Averbrook, MD
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Irvine, California 92618
Principal Investigator: Louis Fehrenbacher, MD
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Jacksonville, Florida 32207
Principal Investigator: Edward Gorak, DO, MS, MBA
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1432 Southwest Blvd.
Jefferson City, Missouri 65109
(573) 632-4800
Principal Investigator: James Wade, MD
Capital Region Medical Center-Goldschmidt Cancer Center At the Goldschmidt Cancer Center in Jefferson City, board...
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117 Harlem Ave
Kankakee, Illinois 60468
(708) 258-9754
Principal Investigator: Sylvia Velinova Falls, MD
Presence Saint Mary's Hospital Presence St. Mary's, originally known as the Emergency Hospital, was opened...
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Kenosha, Wisconsin 53142
Principal Investigator: Thomas Saphner, MD, FACP
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750 Avenue D West
Kingman, Kansas 67068
(620) 532-3147
Principal Investigator: Shaker Dakhil, MD
Cancer Center of Kansas, PA - Kingman Dr. H.E. Hynes founded Cancer Center of Kansas,...
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La Crosse, Wisconsin
Principal Investigator: Brian Burnette, MD
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3525 Lakeland Hills Boulevard
Lakeland, Florida 33805
Principal Investigator: Madhavi Venigalla, MD
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325 Maine Street
Lawrence, Kansas 66044
(785) 505-5000
Principal Investigator: Shaker Dakhil, MD
Lawrence Memorial Hospital Lawrence Memorial Hospital (LMH), in collaboration with its medical staff, is dedicated...
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Lawton, Oklahoma 73505
Principal Investigator: Adam Asch, MD
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