Blood Cancer

NHLBI-MDS / The National MDS Study



Tissue Collection and Natural History Study of Patients with Myelodysplastic Syndrome or Myeloproliferative Neoplasms

STATUS: Active


This research trial collects tissue samples from and studies the history of patients with myelodysplastic syndrome (MDS) or myeloproliferative neoplasms (MPN). Collecting and storing patients' bone marrow, blood, eyebrow hairs, buccal swab, skin, or other tissues to be studied in the laboratory in the future may help doctors learn more about MDS and blood disorders that may lead to MDS. Collecting information about patients and the treatments they receive may allow doctors to better understand how MDS changes over time and this knowledge may lead to better ways to prevent, detect, and treat MDS in the future.
  • 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 12-months of enrollment per the World Health Organization (WHO) criteria 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

  • No prior treatment for MDS at entry and through the time of the entry bone marrow aspirate

  • No treatment with hematopoietic growth factors in prior 6 months

  • If anemic without prior MDS diagnosis, the following tests within the prior 6 months; values that are significantly outside of normal range do not exclude participation but should prompt investigation of alternative etiologies for anemia * B12 level * Serum folate * Mean corpuscular volume (MCV) * Red cell distribution width (RDW) * Ferritin * Iron studies (iron, total iron-binding capacity [TIBC] test, percent saturation)

  • No 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

  • No treatment with radiation therapy in the two years prior to registration

  • No non-hormonal treatment for malignancy within the two years prior to registration

  • No established hereditary bone marrow failure syndrome

  • No known primary diagnosis of aplastic anemia, classical paroxysmal nocturnal hemoglobinuria, amegakaryocytic thrombocytopenic purpura, or large granular lymphocyte leukemia

  • Not enrolled in the Connect MDS/Acute Myeloid Leukemia (AML) Disease Registry

  • In participants with suspected MDS and prior to registration with subsequent bone marrow evaluation, alternative causes for the cytopenias should be considered (e.g., internal bleeding, autoimmune cytopenias, thyroid disorders, other causes of anemia etc.); in select individuals, the following tests could be performed to assist in the diagnostic work-up; these evaluations are not required by the protocol; however, abnormal results in advance of enrollment may reduce the number of non-MDS cases * Copper, serum level * Direct antiglobulin test * Antinuclear antibody (ANA) test * Creatinine * Calculated glomerular filtration rate (GFR) * Thyroid-stimulating hormone (TSH) tests performed in prior 6 months ** Based on centralized pathology review, participants will be classified into the longitudinal cohort of cases (MDS; MDS/MPN overlap disorders; AML with < 30% blasts without core binding factor or acute promyelocytic leukemia [AML < 30% blasts including chromosomal rearrangements between chromosomes 8 and 21 and within chromosome 16 as well as t(15;17)]; idiopathic cytopenia of undetermined significance [ICUS], or at risk based on selected genetic markers) and the cross-sectional cohort (all others); it is not known in advance what percentages of individuals will fall into each cohort; in addition to baseline biological samples, longitudinal samples and data will be collected for approximately 2000 cases of MDS or MDS/MPN overlap disorders and 500 cases of ICUS assigned to the longitudinal cohort; sample and data collection will cease at baseline for all cases assigned to the cross-sectional cohort; submitted samples will be reviewed by a central pathologist to determine eligibility for the longitudinal cohort (i.e., an MDS, MDS/MPN, AML with < 30% blasts without core binding factor or acute promyelocytic leukemia, or ICUS diagnosis); should a discrepancy in diagnosis occur between the central review and study site, the study site will be notified to allow for additional information to be submitted to clarify the diagnosis; such notifications will not occur in real time, and are not intended to assist in patient care; additional central sequencing of selected genetic targets will be performed

Israel
Jerusalem
Shaare Zedek Medical Center
Contact: Site Public Contact

United States
CA
Anaheim
Kaiser Permanente-Anaheim
Contact: Site Public Contact
Email: clinical.trials@kp.org

Baldwin Park
Kaiser Permanente-Baldwin Park
Contact: Site Public Contact
Email: clinical.trials@kp.org

Bellflower
Kaiser Permanente-Bellflower
Contact: Site Public Contact
Email: clinical.trials@kp.org

Fontana
Kaiser Permanente-Fontana
Contact: Site Public Contact
Email: clinical.trials@kp.org

Harbor City
Kaiser Permanente - Harbor City
Contact: Site Public Contact
Email: clinical.trials@kp.org

Irvine
Kaiser Permanente-Irvine
Contact: Site Public Contact
Email: clinical.trials@kp.org

Long Beach
Tibor Rubin VA Medical Center
Contact: Site Public Contact

Los Angeles
Kaiser Permanente Los Angeles Medical Center
Contact: Site Public Contact
Email: clinical.trials@kp.org

Kaiser Permanente West Los Angeles
Contact: Site Public Contact
Email: clinical.trials@kp.org

Palo Alto
VA Palo Alto Health Care System
Contact: Site Public Contact

Panorama City
Kaiser Permanente - Panorama City
Contact: Site Public Contact
Email: clinical.trials@kp.org

Rancho Mirage
Eisenhower Medical Center
Contact: Site Public Contact

Riverside
Kaiser Permanente-Riverside
Contact: Site Public Contact
Email: clinical.trials@kp.org

San Diego
Kaiser Permanente-San Diego Zion
Contact: Site Public Contact
Email: clinical.trials@kp.org

San Francisco
Veterans Affairs Medical Center - San Francisco
Contact: Site Public Contact

San Marcos
Kaiser Permanente-San Marcos
Contact: Site Public Contact
Email: clinical.trials@kp.org

San Mateo
UCSF Cancer Center - San Mateo
Contact: Site Public Contact
Email: cancertrials@ucsf.edu

Woodland Hills
Kaiser Permanente-Woodland Hills
Contact: Site Public Contact
Email: clinical.trials@kp.org

CO
Aurora
Rocky Mountain Regional VA Medical Center
Contact: Site Public Contact

CT
New Haven
Smilow Cancer Center/Yale-New Haven Hospital
Contact: Site Public Contact
Email: canceranswers@yale.edu

Yale University
Contact: Site Public Contact
Email: canceranswers@yale.edu

West Haven
Veterans Affairs Connecticut Healthcare System-West Haven Campus
Contact: Site Public Contact

DE
Newark
Christiana Care Health System-Christiana Hospital
Contact: Site Public Contact
Email: lbarone@christianacare.org

Helen F Graham Cancer Center
Contact: Site Public Contact
Email: lbarone@christianacare.org

Medical Oncology Hematology Consultants PA
Contact: Site Public Contact
Email: lbarone@christianacare.org

FL
Jacksonville
Baptist MD Anderson Cancer Center
Contact: Site Public Contact

Mayo Clinic in Florida
Contact: Site Public Contact

Lakeland
Lakeland Regional Health Hollis Cancer Center
Contact: Site Public Contact

Tampa
Moffitt Cancer Center
Contact: Site Public Contact
Email: ClinicalTrials@moffitt.org

Vero Beach
Indian River Medical Center
Contact: Site Public Contact

GA
Atlanta
Northside Hospital
Contact: Site Public Contact
Email: ClinicalTrials@northside.com

Augusta
Augusta University Medical Center
Contact: Site Public Contact
Email: ga_cares@augusta.edu

Decatur
Atlanta VA Medical Center
Contact: Site Public Contact

Duluth
Northside Hospital - Duluth
Contact: Site Public Contact
Email: Clinical.trials@northside.com

Gainesville
Northeast Georgia Medical Center-Gainesville
Contact: Site Public Contact
Email: cancerpatient.navigator@nghs.com

Lawrenceville
Northside Hospital - Gwinnett
Contact: Site Public Contact
Email: Clinical.trials@northside.com

Savannah
Lewis Cancer and Research Pavilion at Saint Joseph's/Candler
Contact: Site Public Contact
Email: underberga@sjchs.org

Snellville
Suburban Hematology Oncology Associates - Snellville
Contact: Site Public Contact
Email: Clinical.trials@northside.com

HI
Aiea
Pali Momi Medical Center
Contact: Site Public Contact

Queen's Cancer Center - Pearlridge
Contact: Site Public Contact

Honolulu
Hawaii Cancer Care Inc - Waterfront Plaza
Contact: Site Public Contact
Email: i.webster@hawaiicancercare.com

Hawaii Cancer Care Inc-Liliha
Contact: Site Public Contact

Kapiolani Medical Center for Women and Children
Contact: Site Public Contact

Queen's Cancer Cenrer - POB I
Contact: Site Public Contact

Queen's Cancer Center - Kuakini
Contact: Site Public Contact

Queen's Medical Center
Contact: Site Public Contact

Straub Clinic and Hospital
Contact: Site Public Contact

University of Hawaii Cancer Center
Contact: Site Public Contact

IA
Ames
McFarland Clinic PC - Ames
Contact: Site Public Contact
Email: ksoder@mcfarlandclinic.com

Cedar Rapids
Mercy Hospital
Contact: Site Public Contact

Oncology Associates at Mercy Medical Center
Contact: Site Public Contact

Clive
Medical Oncology and Hematology Associates-West Des Moines
Contact: Site Public Contact

Mercy Cancer Center-West Lakes
Contact: Site Public Contact
Email: cancerresearch@mercydesmoines.org

Creston
Greater Regional Medical Center
Contact: Site Public Contact
Email: cancerresearch@mercydesmoines.org

Des Moines
Iowa Methodist Medical Center
Contact: Site Public Contact

Medical Oncology and Hematology Associates-Des Moines
Contact: Site Public Contact

Mercy Medical Center - Des Moines
Contact: Site Public Contact
Email: cancerresearch@mercydesmoines.org

Mission Cancer and Blood - Laurel
Contact: Site Public Contact

West Des Moines
Mercy Medical Center-West Lakes
Contact: Site Public Contact
Email: cancerresearch@mercydesmoines.org

ID
Coeur D'Alene
Kootenai Health - Coeur d'Alene
Contact: Site Public Contact
Email: mccinfo@mtcancer.org

Post Falls
Kootenai Clinic Cancer Services - Post Falls
Contact: Site Public Contact
Email: mccinfo@mtcancer.org

Sandpoint
Kootenai Cancer Clinic
Contact: Site Public Contact
Email: mccinfo@mtcancer.org

IL
Barrington
Advocate Good Shepherd Hospital
Contact: Site Public Contact

Bloomington
Illinois CancerCare-Bloomington
Contact: Site Public Contact
Email: andersonj@illinoiscancercare.com

Carbondale
Memorial Hospital of Carbondale
Contact: Site Public Contact
Email: clinical.research@sih.net

Carterville
SIH Cancer Institute
Contact: Site Public Contact
Email: clinical.research@sih.net

Centralia
Centralia Oncology Clinic
Contact: Site Public Contact
Email: morganthaler.jodi@mhsil.com

Chicago
Advocate Illinois Masonic Medical Center
Contact: Site Public Contact

Crystal Lake
AMG Crystal Lake - Oncology
Contact: Site Public Contact
Email: advocateresearch@advocate.com

Danville
Carle on Vermilion
Contact: Site Public Contact
Email: Research@carle.com

DeKalb
Northwestern Medicine Cancer Center Kishwaukee
Contact: Site Public Contact
Email: Donald.Smith3@nm.org

Decatur
Cancer Care Specialists of Illinois - Decatur
Contact: Site Public Contact
Email: morganthaler.jodi@mhsil.com

Decatur Memorial Hospital
Contact: Site Public Contact
Email: morganthaler.jodi@mhsil.com

Downers Grove
Advocate Good Samaritan Hospital
Contact: Site Public Contact
Email: Barbara.barhamand@advocatehealth.com

Effingham
Carle Physician Group-Effingham
Contact: Site Public Contact
Email: Research@carle.com

Crossroads Cancer Center
Contact: Site Public Contact
Email: morganthaler.jodi@mhsil.com

Elgin
Advocate Sherman Hospital
Contact: Site Public Contact

Elk Grove Village
Ascension Alexian Brothers - Elk Grove Village
Contact: Site Public Contact
Email: fredianc@alexian.net

Galesburg
Illinois CancerCare-Galesburg
Contact: Site Public Contact
Email: andersonj@illinoiscancercare.com

Geneva
Northwestern Medicine Cancer Center Delnor
Contact: Site Public Contact
Email: Donald.Smith3@nm.org

Hazel Crest
Advocate South Suburban Hospital
Contact: Site Public Contact

Hinsdale
AMITA Health Cancer Institute and Outpatient Center
Contact: Site Public Contact

Kankakee
Presence Saint Mary's Hospital
Contact: Site Public Contact

Libertyville
AMG Libertyville - Oncology
Contact: Site Public Contact
Email: advocateresearch@advocatehealth.com

Condell Memorial Hospital
Contact: Site Public Contact
Email: advocateresearch@advocatehealth.com

Mattoon
Carle Physician Group-Mattoon/Charleston
Contact: Site Public Contact
Email: Research@carle.com

O'Fallon
Cancer Care Center of O'Fallon
Contact: Site Public Contact
Email: morganthaler.jodi@mhsil.com

Oak Lawn
Advocate Christ Medical Center
Contact: Site Public Contact

Park Ridge
Advocate Lutheran General Hospital
Contact: Site Public Contact

Peoria
Illinois CancerCare-Peoria
Contact: Site Public Contact
Email: andersonj@illinoiscancercare.com

Urbana
Carle Cancer Center
Contact: Site Public Contact
Email: Research@carle.com

Warrenville
Northwestern Medicine Cancer Center Warrenville
Contact: Site Public Contact
Email: Donald.Smith3@nm.org

KS
Chanute
Cancer Center of Kansas - Chanute
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Dodge City
Cancer Center of Kansas - Dodge City
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Fort Scott
Cancer Center of Kansas - Fort Scott
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Independence
Cancer Center of Kansas-Independence
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Kingman
Cancer Center of Kansas-Kingman
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Lawrence
Lawrence Memorial Hospital
Contact: Site Public Contact
Email: Stephanie.Norris@LMH.ORG

Lenexa
Kansas Institute of Medicine Cancer and Blood Center
Contact: Site Public Contact
Email: aroland@kccop.org

Liberal
Cancer Center of Kansas-Liberal
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Newton
Cancer Center of Kansas - Newton
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Parsons
Cancer Center of Kansas - Parsons
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Pratt
Cancer Center of Kansas - Pratt
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Salina
Cancer Center of Kansas - Salina
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Wellington
Cancer Center of Kansas - Wellington
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Wichita
Ascension Via Christi Hospitals Wichita
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Associates In Womens Health
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Cancer Center of Kansas - Wichita
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Cancer Center of Kansas-Wichita Medical Arts Tower
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

Winfield
Cancer Center of Kansas - Winfield
Contact: Site Public Contact
Email: Keisha.humphries@ascension.org

LA
Monroe
Ochsner LSU Health Monroe Medical Center
Contact: Site Public Contact
Email: LPost@lsuhsc.edu

Shreveport
LSU Health Sciences Center at Shreveport
Contact: Site Public Contact
Email: LPost@lsuhsc.edu

MA
Worcester
UMass Memorial Medical Center - University Campus
Contact: Site Public Contact
Email: cancer.research@umassmed.edu

MD
Baltimore
Johns Hopkins University/Sidney Kimmel Cancer Center
Contact: Site Public Contact
Email: jhcccro@jhmi.edu

Bel Air
UM Upper Chesapeake Medical Center
Contact: Site Public Contact

Bethesda
Walter Reed National Military Medical Center
Contact: Site Public Contact

ME
Augusta
Harold Alfond Center for Cancer Care
Contact: Site Public Contact

Belfast
Waldo County General Hospital
Contact: Site Public Contact

Biddeford
MaineHealth/SMHC Cancer Care and Blood Disorders-Biddeford
Contact: Site Public Contact
Email: LLemire@mmc.org

Norway
Stephens Memorial Hospital
Contact: Site Public Contact
Email: OncClinicalResearch@mmc.org

Rockport
Penobscot Bay Medical Center
Contact: Site Public Contact
Email: ClinicalResearch@mmc.org

Sanford
MaineHealth/SMHC Cancer Care and Blood Disorders-Sanford
Contact: Site Public Contact
Email: LLemire@mmc.org

South Portland
Maine Medical Partners - South Portland
Contact: Site Public Contact
Email: ClinicalResearch@mmc.org

York
York Hospital
Contact: Site Public Contact

MI
Ann Arbor
Saint Joseph Mercy Hospital
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

Brighton
Saint Joseph Mercy Brighton
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

Trinity Health IHA Medical Group Hematology Oncology - Brighton
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

Canton
Saint Joseph Mercy Canton
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

Trinity Health IHA Medical Group Hematology Oncology - Canton
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

Chelsea
Saint Joseph Mercy Chelsea
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

Trinity Health IHA Medical Group Hematology Oncology - Chelsea Hospital
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

Dearborn
Beaumont Hospital - Dearborn
Contact: Site Public Contact

East Lansing
Michigan State University Clinical Center
Contact: Site Public Contact

Grand Rapids
Spectrum Health at Butterworth Campus
Contact: Site Public Contact
Email: crcwm-regulatory@crcwm.org

Kalamazoo
West Michigan Cancer Center
Contact: Site Public Contact
Email: crcwm-regulatory@crcwm.org

Livonia
Trinity Health Saint Mary Mercy Livonia Hospital
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

Reed City
Spectrum Health Reed City Hospital
Contact: Site Public Contact
Email: crcwm-regulatory@crcwm.org

Royal Oak
William Beaumont Hospital-Royal Oak
Contact: Site Public Contact

Saginaw
Ascension Saint Mary's Hospital
Contact: Site Public Contact
Email: lori.srebinski@ascension.org

Southfield
Ascension Providence Hospitals - Southfield
Contact: Site Public Contact
Email: karen.fife@ascension.org

Troy
William Beaumont Hospital - Troy
Contact: Site Public Contact

Wyoming
Metro Health Hospital
Contact: Site Public Contact
Email: crcwm-regulatory@crcwm.org

Ypsilanti
Trinity Health IHA Medical Group Hematology Oncology Ann Arbor Campus
Contact: Site Public Contact
Email: MCRCwebsitecontactform@stjoeshealth.org

MN
Bemidji
Sanford Joe Lueken Cancer Center
Contact: Site Public Contact
Email: OncologyClinicalTrialsFargo@sanfordhealth.org

Coon Rapids
Mercy Hospital
Contact: Site Public Contact
Email: mmcorc@healthpartners.com

Duluth
Essentia Health Cancer Center
Contact: Site Public Contact
Email: CancerTrials@EssentiaHealth.org

Essentia Health Saint Mary's Medical Center
Contact: Site Public Contact
Email: CancerTrials@EssentiaHealth.org

Miller-Dwan Hospital
Contact: Site Public Contact
Email: CancerTrials@EssentiaHealth.org

Saint Luke's Hospital of Duluth
Contact: Site Public Contact
Email: kdean@slhduluth.com

Edina
Fairview Southdale Hospital
Contact: Site Public Contact
Email: mmcorc@healthpartners.com

Fridley
Unity Hospital
Contact: Site Public Contact
Email: mmcorc@healthpartners.com

Minneapolis
Abbott-Northwestern Hospital
Contact: Site Public Contact
Email: mmcorc@healthpartners.com

Minneapolis VA Medical Center
Contact: Site Public Contact

Saint Louis Park
Park Nicollet Clinic - Saint Louis Park
Contact: Site Public Contact
Email: mmcorc@healthpartners.com

Saint Paul
United Hospital
Contact: Site Public Contact
Email: mmcorc@healthpartners.com

Shakopee
Saint Francis Regional Medical Center
Contact: Site Public Contact
Email: mmcorc@healthpartners.com

MO
Cape Girardeau
Saint Francis Medical Center
Contact: Site Public Contact
Email: sfmc@sfmc.net

Jefferson City
Capital Region Southwest Campus
Contact: Site Public Contact
Email: swooden@mail.crmc.org

Kansas City
Kansas City Veterans Affairs Medical Center
Contact: Site Public Contact

Rolla
Delbert Day Cancer Institute at PCRMC
Contact: Site Public Contact
Email: research@phelpshealth.org

Mercy Clinic-Rolla-Cancer and Hematology
Contact: Site Public Contact

Saint Joseph
Heartland Regional Medical Center
Contact: Site Public Contact
Email: linda.schumacher@mymlc.com

Springfield
CoxHealth South Hospital
Contact: Site Public Contact

Mercy Hospital Springfield
Contact: Site Public Contact

MT
Bozeman
Bozeman Deaconess Hospital
Contact: Site Public Contact
Email: mccinfo@mtcancer.org

Great Falls
Benefis Healthcare- Sletten Cancer Institute
Contact: Site Public Contact
Email: mccinfo@mtcancer.org

NC
Asheville
Mission Hospital
Contact: Site Public Contact
Email: NCDV.ResearchRegulatory@HCAHealthcare.com

Durham
Durham VA Medical Center
Contact: Site Public Contact
Email: VHADURcancertrials@va.gov

Washington
Marion L Shepard Cancer Center at Vidant Beaufort Hospital
Contact: Site Public Contact

ND
Bismarck
Sanford Bismarck Medical Center
Contact: Site Public Contact
Email: OncologyClinicalTrialsFargo@sanfordhealth.org

Fargo
Sanford Broadway Medical Center
Contact: Site Public Contact
Email: OncologyClinicalTrialsFargo@sanfordhealth.org

Sanford Roger Maris Cancer Center
Contact: Site Public Contact
Email: OncologyClinicalTrialsFargo@sanfordhealth.org

NE
Grand Island
CHI Health Saint Francis
Contact: Site Public Contact

NJ
East Orange
Veterans Adminstration New Jersey Health Care System
Contact: Site Public Contact
Email: patricia.goyer@med.va.gov

Mullica Hill
Inspira Medical Center Mullica Hill
Contact: Site Public Contact
Email: DeNigrisJ@ihn.org

NM
Albuquerque
University of New Mexico Cancer Center
Contact: Site Public Contact
Email: LByatt@nmcca.org

Las Cruces
Memorial Medical Center - Las Cruces
Contact: Site Public Contact
Email: Kim.Hoffman@lpnt.net

NV
Henderson
OptumCare Cancer Care at Seven Hills
Contact: Site Public Contact
Email: research@sncrf.org

Las Vegas
Alliance for Childhood Diseases/Cure 4 the Kids Foundation
Contact: Site Public Contact
Email: research@sncrf.org

Comprehensive Cancer Centers of Nevada
Contact: Site Public Contact
Email: research@sncrf.org

Comprehensive Cancer Centers of Nevada - Central Valley
Contact: Site Public Contact
Email: research@sncrf.org

Comprehensive Cancer Centers of Nevada - Northwest
Contact: Site Public Contact
Email: research@sncrf.org

Hope Cancer Care of Nevada
Contact: Site Public Contact
Email: research@sncrf.org

OptumCare Cancer Care at Charleston
Contact: Site Public Contact
Email: research@sncrf.org

OptumCare Cancer Care at Fort Apache
Contact: Site Public Contact
Email: research@sncrf.org

OptumCare Cancer Care at MountainView
Contact: Site Public Contact
Email: research@sncrf.org

NY
Bronx
James J Peters VA Medical Center
Contact: Site Public Contact
Email: kl2965@cumc.columbia.edu

Montefiore Medical Center - Moses Campus
Contact: Site Public Contact
Email: eskwak@montefiore.org

Montefiore Medical Center-Einstein Campus
Contact: Site Public Contact
Email: eskwak@montefiore.org

Brooklyn
Maimonides Medical Center
Contact: Site Public Contact

Buffalo
Roswell Park Cancer Institute
Contact: Site Public Contact
Email: askroswell@roswellpark.org

East Hills
Cancer Institute at Saint Francis Hospital
Contact: Site Public Contact
Email: ctsucontact@westat.com

Elmira
Arnot Ogden Medical Center/Falck Cancer Center
Contact: Site Public Contact

Glens Falls
Glens Falls Hospital
Contact: Site Public Contact

Lake Success
Northwell Health/Center for Advanced Medicine
Contact: Site Public Contact

Manhasset
North Shore University Hospital
Contact: Site Public Contact

New Hyde Park
Long Island Jewish Medical Center
Contact: Site Public Contact

Sleepy Hollow
Phelps Memorial Hospital Center
Contact: Site Public Contact

West Islip
Good Samaritan Hospital Medical Center
Contact: Site Public Contact

OH
Akron
Cleveland Clinic Akron General
Contact: Site Public Contact
Email: CancerAnswer@ccf.org

Cleveland
Cleveland Clinic Cancer Center/Fairview Hospital
Contact: Site Public Contact
Email: TaussigResearch@ccf.org

Cleveland Clinic Foundation
Contact: Site Public Contact
Email: TaussigResearch@ccf.org

MetroHealth Medical Center
Contact: Site Public Contact
Email: dstrater@metrohealth.org

Independence
Cleveland Clinic Cancer Center Independence
Contact: Site Public Contact
Email: TaussigResearch@ccf.org

Kettering
Kettering Medical Center
Contact: Site Public Contact
Email: clinical.trials@daytonncorp.org

Mansfield
Cleveland Clinic Cancer Center Mansfield
Contact: Site Public Contact
Email: TaussigResearch@ccf.org

Mayfield Heights
Hillcrest Hospital Cancer Center
Contact: Site Public Contact
Email: TaussigResearch@ccf.org

Sandusky
North Coast Cancer Care
Contact: Site Public Contact
Email: TaussigResearch@ccf.org

WPAFB
Wright-Patterson Medical Center
Contact: Site Public Contact
Email: clinical.trials@daytonncorp.org

Wooster
Cleveland Clinic Wooster Family Health and Surgery Center
Contact: Site Public Contact
Email: TaussigResearch@ccf.org

OK
Lawton
Cancer Centers of Southwest Oklahoma Research
Contact: Site Public Contact

Oklahoma City
Mercy Hospital Oklahoma City
Contact: Site Public Contact

University of Oklahoma Health Sciences Center
Contact: Site Public Contact
Email: ou-clinical-trials@ouhsc.edu

OR
Portland
Kaiser Permanente Northwest
Contact: Site Public Contact
Email: information@kpchr.org

Oregon Health and Science University
Contact: Site Public Contact
Email: trials@ohsu.edu

Portland VA Medical Center
Contact: Site Public Contact

PA
Allentown
Lehigh Valley Hospital-Cedar Crest
Contact: Site Public Contact
Email: Morgan_M.Horton@lvhn.org

Bethlehem
Lehigh Valley Hospital - Muhlenberg
Contact: Site Public Contact
Email: Morgan_M.Horton@lvhn.org

Danville
Geisinger Medical Center
Contact: Site Public Contact
Email: HemonCCTrials@geisinger.edu

Easton
Easton Hospital
Contact: Site Public Contact

Ephrata
Ephrata Cancer Center
Contact: Site Public Contact

Gettysburg
Adams Cancer Center
Contact: Site Public Contact

Hazleton
Geisinger Medical Center-Cancer Center Hazleton
Contact: Site Public Contact
Email: HemonCCTrials@geisinger.edu

Lebanon
Sechler Family Cancer Center
Contact: Site Public Contact
Email: doxenberg@wellspan.org

Lewisburg
Geisinger Medical Oncology-Lewisburg
Contact: Site Public Contact
Email: HemonCCTrials@geisinger.edu

Philadelphia
University of Pennsylvania/Abramson Cancer Center
Contact: Site Public Contact

Phoenixville
Phoenixville Hospital
Contact: Site Public Contact

Pottstown
Pottstown Hospital
Contact: Site Public Contact

Pottsville
Geisinger Cancer Services-Pottsville
Contact: Site Public Contact
Email: HemonCCTrials@geisinger.edu

Reading
Penn State Health Saint Joseph Medical Center
Contact: Site Public Contact
Email: dward1@pennstatehealth.psu.edu

Wilkes-Barre
Geisinger Wyoming Valley/Henry Cancer Center
Contact: Site Public Contact
Email: HemonCCTrials@geisinger.edu

Williamsport
UPMC Susquehanna
Contact: Site Public Contact

York
WellSpan Health-York Hospital
Contact: Site Public Contact

SC
Bluffton
Saint Joseph's/Candler - Bluffton Campus
Contact: Site Public Contact
Email: underberga@sjchs.org

Boiling Springs
Prisma Health Cancer Institute - Spartanburg
Contact: Site Public Contact

Charleston
Ralph H Johnson VA Medical Center
Contact: Site Public Contact
Email: ashley.salvo@va.gov

Easley
Prisma Health Cancer Institute - Easley
Contact: Site Public Contact
Email: Kim.Williams3@prismahealth.org

Greenville
Prisma Health Cancer Institute - Butternut
Contact: Site Public Contact

Prisma Health Cancer Institute - Eastside
Contact: Site Public Contact

Prisma Health Cancer Institute - Faris
Contact: Site Public Contact

Saint Francis Cancer Center
Contact: Site Public Contact
Email: melissa_beckman@bshsi.org

Saint Francis Hospital
Contact: Site Public Contact
Email: melissa_beckman@bshsi.org

Greenwood
Self Regional Healthcare
Contact: Site Public Contact
Email: nmcgaha@selfregional.org

Greer
Prisma Health Cancer Institute - Greer
Contact: Site Public Contact

Seneca
Prisma Health Cancer Institute - Seneca
Contact: Site Public Contact

Spartanburg
Spartanburg Medical Center
Contact: Site Public Contact
Email: kmertz-rivera@gibbscc.org

SD
Aberdeen
Avera Cancer Institute-Aberdeen
Contact: Site Public Contact
Email: oncregulatory@avera.org

Rapid City
Rapid City Regional Hospital
Contact: Site Public Contact
Email: research@rcrh.org

Sioux Falls
Avera Cancer Institute
Contact: Site Public Contact
Email: OncRegulatory@avera.org

Sanford Cancer Center Oncology Clinic
Contact: Site Public Contact
Email: OncologyClinicTrialsSF@sanfordhealth.org

Sanford USD Medical Center - Sioux Falls
Contact: Site Public Contact
Email: OncologyClinicalTrialsSF@SanfordHealth.org

TN
Memphis
Baptist Memorial Hospital and Cancer Center-Memphis
Contact: Site Public Contact
Email: BCCclintrials@bmhcc.org

Nashville
Meharry Medical College
Contact: Site Public Contact
Email: Nancy.McCullough@NashvilleHA.org

TX
Austin
Dell Seton Medical Center at The University of Texas
Contact: Site Public Contact

Dallas
UT Southwestern/Simmons Cancer Center-Dallas
Contact: Site Public Contact
Email: canceranswerline@UTSouthwestern.edu

Richardson
UT Southwestern Clinical Center at Richardson/Plano
Contact: Site Public Contact
Email: Suzanne.cole@utsouthwestern.edu

San Antonio
University of Texas Health Science Center at San Antonio
Contact: Site Public Contact
Email: phoresearchoffice@uthscsa.edu

VA
Alexandria
Inova Alexandria Hospital
Contact: Site Public Contact
Email: Stephanie.VanBebber@inova.org

Fairfax
Inova Fair Oaks Hospital
Contact: Site Public Contact
Email: Stephanie.VanBebber@inova.org

Inova Schar Cancer Institute
Contact: Site Public Contact
Email: Stephanie.VanBebber@inova.org

Falls Church
Inova Fairfax Hospital
Contact: Site Public Contact
Email: Stephanie.VanBebber@inova.org

Fishersville
Augusta Health Center for Cancer and Blood Disorders
Contact: Site Public Contact

WI
Appleton
Ascension Saint Elizabeth Hospital
Contact: Site Public Contact
Email: AWRI.inquiry@ascension.org

Brookfield
Ascension Southeast Wisconsin Hospital - Elmbrook Campus
Contact: Site Public Contact
Email: AWRI.Inquiry@Ascension.org

Burlington
Aurora Cancer Care-Southern Lakes VLCC
Contact: Site Public Contact
Email: ncorp@aurora.org

Eau Claire
Marshfield Medical Center-EC Cancer Center
Contact: Site Public Contact
Email: oncology.clinical.trials@marshfieldresearch.org

Fond Du Lac
Aurora Health Center-Fond du Lac
Contact: Site Public Contact
Email: ncorp@aurora.org

Franklin
Ascension Saint Francis - Reiman Cancer Center
Contact: Site Public Contact
Email: AWRI.Inquiry@Ascension.org

Germantown
Aurora Health Care Germantown Health Center
Contact: Site Public Contact
Email: ncorp@aurora.org

Grafton
Aurora Cancer Care-Grafton
Contact: Site Public Contact
Email: ncorp@aurora.org

Green Bay
Aurora BayCare Medical Center
Contact: Site Public Contact
Email: ncorp@aurora.org

Green Bay Oncology Limited at Saint Mary's Hospital
Contact: Brian Leslie Burnette

Green Bay Oncology at Saint Vincent Hospital
Contact: Brian Leslie Burnette

Saint Vincent Hospital Cancer Center Green Bay
Contact: Site Public Contact
Email: ewd_research_admin@hshs.org

Saint Vincent Hospital Cancer Center at Saint Mary's
Contact: Site Public Contact
Email: ewd_research_admin@hshs.org

Kenosha
Aurora Cancer Care-Kenosha South
Contact: Site Public Contact
Email: ncorp@aurora.org

La Crosse
Gundersen Lutheran Medical Center
Contact: Site Public Contact
Email: cancerctr@gundersenhealth.org

Mayo Clinic Health System-Franciscan Healthcare
Contact: Site Public Contact

Madison
University of Wisconsin Carbone Cancer Center
Contact: Site Public Contact

William S Middleton VA Medical Center
Contact: Site Public Contact

Manitowoc
Holy Family Memorial Hospital
Contact: Site Public Contact

Marinette
Aurora Bay Area Medical Group-Marinette
Contact: Site Public Contact
Email: ncorp@aurora.org

Marshfield
Marshfield Medical Center-Marshfield
Contact: Site Public Contact
Email: oncology.clinical.trials@marshfieldresearch.org

Milwaukee
Aurora Cancer Care-Milwaukee
Contact: Site Public Contact
Email: ncorp@aurora.org

Aurora Saint Luke's Medical Center
Contact: Site Public Contact
Email: ncorp@aurora.org

Aurora Sinai Medical Center
Contact: Site Public Contact
Email: ncorp@aurora.org

Minocqua
Marshfield Clinic-Minocqua Center
Contact: Site Public Contact
Email: oncology.clinical.trials@marshfieldresearch.org

Oshkosh
Ascension Mercy Hospital
Contact: Site Public Contact
Email: AWRI.inquiry@ascension.org

Vince Lombardi Cancer Clinic - Oshkosh
Contact: Site Public Contact
Email: ncorp@aurora.org

Racine
Ascension All Saints Hospital
Contact: Site Public Contact
Email: AWRI.Inquiry@Ascension.org

Aurora Cancer Care-Racine
Contact: Site Public Contact
Email: ncorp@aurora.org

Rice Lake
Marshfield Medical Center-Rice Lake
Contact: Site Public Contact
Email: oncology.clinical.trials@marshfieldresearch.org

Sheboygan
Vince Lombardi Cancer Clinic-Sheboygan
Contact: Site Public Contact
Email: ncorp@aurora.org

Stevens Point
Marshfield Medical Center-River Region at Stevens Point
Contact: Site Public Contact
Email: oncology.clinical.trials@marshfieldresearch.org

Summit
Aurora Medical Center in Summit
Contact: Site Public Contact
Email: ncorp@aurora.org

Two Rivers
Vince Lombardi Cancer Clinic-Two Rivers
Contact: Site Public Contact
Email: ncorp@aurora.org

Wauwatosa
Ascension Medical Group Southeast Wisconsin - Mayfair Road
Contact: Site Public Contact
Email: AWRI.Inquiry@Ascension.org

Aurora Cancer Care-Milwaukee West
Contact: Site Public Contact
Email: ncorp@aurora.org

West Allis
Aurora West Allis Medical Center
Contact: Site Public Contact
Email: ncorp@aurora.org

Weston
Marshfield Medical Center - Weston
Contact: Site Public Contact
Email: oncology.clinical.trials@marshfieldresearch.org

WV
Charleston
West Virginia University Charleston Division
Contact: Site Public Contact

PRIMARY OBJECTIVES:
I. To develop a high-quality clinical database containing clinical history, including environmental exposure history, presenting signs and symptoms, diagnostic testing results, co-existing diseases, therapies and response to therapies, disease progression, quality of life and survival.
II. To develop a high-quality biorepository linked to the clinical data that will facilitate diverse studies, including genetic, epigenetic, immunologic, proteomic, and cell-functional and cell-phenotypic studies through the development of: central communication with the biorepository to ensure timely and accurate collections and biospecimen data appended to the clinical database; defined standard operating procedures for the collection, processing, storage and distribution, with special emphasis on processing protocols fit-for-purpose to sample requirements for downstream testing; and quality management procedures to ensure minimal numbers of errors in the management of the biospecimens.
III. To facilitate broad use of these linked data and specimens to support studies focused on: improving diagnostic accuracy, risk-stratification and prognostication, and medical decision-making in MDS; understanding quality of life and its relationship to changing disease and treatment status; understanding the pathogenesis of MDS and diverse MDS subtypes, including genetic, epigenetic, immunologic mechanisms; optimizing treatment strategies for specific subtypes of MDS; identifying novel biomarkers for MDS outcomes; and identifying novel targets for therapeutic interventions in MDS.

SECONDARY OBJECTIVES:
I. Detecting improved prognostic factors in low risk MDS. (Potential Studies)
II. Detecting markers of improved response to hypomethylating therapy. (Potential Studies)
III. Quality of life (QOL) and anemia therapy. (Potential Studies)
IV. Genetic factors in patients with complex karyotype. (Potential Studies)
V. Prognostic significance of splicing factor 3b subunit 1 (SF3B1) in MDS patients with refractory anemia with ring sideroblasts (RARS). (Potential Studies)

OUTLINE:
Patients undergo blood, bone marrow, eyebrow hairs, and buccal swab. Patients' medical records, baseline laboratory tests, quality of life, and diagnostic information including pathology reports and treatment history are also reviewed.

After the baseline visit, patients are followed up every 6 months. Follow up visits include disease evaluation, physical examination and collection of peripheral blood sample. Bone marrow biopsy and aspiration is performed when clinically necessary. Patients also complete the MDS-specific Qualify of Life in Myelodysplasia Scale (QUALMS), Functional Assessment of Cancer Therapy-General (FACT-G) (version 4), the Patient Reported Outcome Measurement Information System (PROMIS) Short Form version 1.0-Fatigue 7a, and the European Quality of Life-5 Dimensions-5 Levels (EQ-5D-5L).

Interactive content above is from the official study record on the National Cancer Institute website, cancer.gov.



NHLBI-MDS / The National MDS Study Home Page

The ECOG-ACRIN Cancer Research Group is leading this trial as a collaborator. For patient recruitment, the National Cancer Institute is contributing access to its two large cancer research networks, the NCI National Clinical Trials Network (NCTN) and the NCI Community Oncology Research Program (NCORP). Visit the official website, TheNationalMDSStudy.net to learn about other collaborators.

NHLBI-MDS / The National MDS Study Home Page
NHLBI-MDS / The National MDS Study Home Page
 
ECOG-ACRIN Cancer Research Group