NCT02775383

Brief Summary

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.

Trial Health

90
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
2,115

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Jun 2016

Longer than P75 for all trials

Geographic Reach
2 countries

281 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

May 2, 2016

Completed
15 days until next milestone

First Posted

Study publicly available on registry

May 17, 2016

Completed
27 days until next milestone

Study Start

First participant enrolled

June 13, 2016

Completed
9.1 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

July 31, 2025

Completed
5 months until next milestone

Study Completion

Last participant's last visit for all outcomes

December 31, 2025

Completed
Last Updated

February 3, 2026

Status Verified

November 1, 2025

Enrollment Period

9.1 years

First QC Date

May 2, 2016

Last Update Submit

January 30, 2026

Conditions

Keywords

National MDS StudyMDSIdiopathiccytopeniacytopeniasICUSMDS/MPNMyeloproliferative NeoplasmBiorepository

Outcome Measures

Primary Outcomes (1)

  • Number of patients dying

    Deaths will be reported on study case report forms

    Through study completion, an average of 3 years

Secondary Outcomes (1)

  • Number of participants progressing to Acute Myeloid Leukemia (AML)

    Through study completion, an average of 3 years

Study Arms (2)

Longitudinal

Participants with MDS, MDS/MPN overlap disorder, AML \<30% blasts without core binding factor or acute promyelocytic leukemia, ICUS, or at risk based on select karyotypic or genetic abnormalities

Other: Therapeutic

Cross-sectional

Participants who do not have MDS, MDS/MPN overlap disorder, or ICUS and have the baseline visit only

Other: Therapeutic

Interventions

Observational Study

Cross-sectionalLongitudinal

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Patients with suspected MDS or MDS/MPN overlap disorder who are undergoing diagnostic workup and bone marrow assessments, and patients diagnosed with MDS within 6-months of enrollment and undergoing clinical evaluation and bone marrow assessments to confirm MDS or evaluate disease status

You may qualify if:

  • 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) 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
  • If anemic without prior MDS diagnosis, B12 level, serum folate, mean corpuscular volume (MCV), red cell distribution width (RDW), ferritin, and iron studies (Iron, total iron-binding capacity (TIBC) test, and percent saturation) must be performed within prior 6 months.

You may not qualify if:

  • 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)

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (281)

Kaiser Permanente-Anaheim

Anaheim, California, 92806, United States

Location

Kaiser Permanente-Baldwin Park

Baldwin Park, California, 91706, United States

Location

Kaiser Permanente-Bellflower

Bellflower, California, 90706, United States

Location

Kaiser Permanente-Fontana

Fontana, California, 92335, United States

Location

Kaiser Permanente - South Bay

Harbor City, California, 90710, United States

Location

Kaiser Permanente-Irvine

Irvine, California, 92618, United States

Location

Tibor Rubin VA Medical Center

Long Beach, California, 90822, United States

Location

Kaiser Permanente Los Angeles Medical Center

Los Angeles, California, 90027, United States

Location

Kaiser Permanente-Cadillac

Los Angeles, California, 90034, United States

Location

Va Palo Alto Health Care System

Palo Alto, California, 94304, United States

Location

Kaiser Permanente - Panorama City

Panorama City, California, 91402, United States

Location

Eisenhower Medical Center

Rancho Mirage, California, 92270, United States

Location

Kaiser Permanente-Riverside

Riverside, California, 92505, United States

Location

Kaiser Permanente-San Diego Zion

San Diego, California, 92120, United States

Location

Veterans Affairs Medical Center - San Francisco

San Francisco, California, 94121, United States

Location

Kaiser Permanente-San Marcos

San Marcos, California, 92078, United States

Location

Kaiser Permanente-Woodland Hills

Woodland Hills, California, 91367, United States

Location

Rocky Mountain Regional VA Medical Center

Aurora, Colorado, 80045, United States

Location

Smilow Cancer Center/Yale-New Haven Hospital

New Haven, Connecticut, 06511, United States

Location

Yale University

New Haven, Connecticut, 06520, United States

Location

Veterans Affairs Connecticut Healthcare System-West Haven Campus

West Haven, Connecticut, 06516, United States

Location

Helen F Graham Cancer Center

Newark, Delaware, 19713, United States

Location

Medical Oncology Hematology Consultants PA

Newark, Delaware, 19713, United States

Location

Regional Hematology and Oncology PA

Newark, Delaware, 19713, United States

Location

Christiana Care Health System-Christiana Hospital

Newark, Delaware, 19718, United States

Location

Baptist MD Anderson Cancer Center

Jacksonville, Florida, 32207, United States

Location

Mayo Clinic in Florida

Jacksonville, Florida, 32224, United States

Location

Lakeland Regional Health Hollis Cancer Center

Lakeland, Florida, 33805, United States

Location

Moffitt Cancer Center

Tampa, Florida, 33612, United States

Location

Indian River Medical Center

Vero Beach, Florida, 32960, United States

Location

Northside Hospital

Atlanta, Georgia, 30342, United States

Location

Augusta University Medical Center

Augusta, Georgia, 30912, United States

Location

Atlanta VA Medical Center

Decatur, Georgia, 30033, United States

Location

Northside Hospital - Duluth

Duluth, Georgia, 30096, United States

Location

Northeast Georgia Medical Center-Gainesville

Gainesville, Georgia, 30501, United States

Location

Northside Hospital - Gwinnett

Lawrenceville, Georgia, 30046, United States

Location

Lewis Cancer and Research Pavilion at Saint Joseph's/Candler

Savannah, Georgia, 31405, United States

Location

Suburban Hematology Oncology Associates - Snellville

Snellville, Georgia, 30078, United States

Location

Queen's Cancer Center - POB I

Honolulu, Hawaii, 96813, United States

Location

Queen's Medical Center

Honolulu, Hawaii, 96813, United States

Location

Straub Clinic and Hospital

Honolulu, Hawaii, 96813, United States

Location

University of Hawaii Cancer Center

Honolulu, Hawaii, 96813, United States

Location

Hawaii Cancer Care Inc-POB II

Honolulu, Hawaii, 96817, United States

Location

OnCare Hawaii - Liliha

Honolulu, Hawaii, 96817, United States

Location

Queen's Cancer Center - Kuakini

Honolulu, Hawaii, 96817, United States

Location

Kapiolani Medical Center for Women and Children

Honolulu, Hawaii, 96826, United States

Location

Pali Momi Medical Center

‘Aiea, Hawaii, 96701, United States

Location

Queen's Cancer Center - Pearlridge

‘Aiea, Hawaii, 96701, United States

Location

Kootenai Medical Center

Coeur d'Alene, Idaho, 83814, United States

Location

Kootenai Cancer Center

Post Falls, Idaho, 83854, United States

Location

Kootenai Cancer Clinic

Sandpoint, Idaho, 83864, United States

Location

Illinois CancerCare - Bloomington

Bloomington, Illinois, 61704, United States

Location

Memorial Hospital of Carbondale

Carbondale, Illinois, 62901, United States

Location

SIH Cancer Institute

Carterville, Illinois, 62918, United States

Location

Centralia Oncology Clinic

Centralia, Illinois, 62801, United States

Location

Carle on Vermilion

Danville, Illinois, 61832, United States

Location

Decatur Memorial Hospital

Decatur, Illinois, 62522, United States

Location

Cancer Care Specialists of Central Illinois - Decatur

Decatur, Illinois, 62568, United States

Location

Carle Physician Group-Effingham

Effingham, Illinois, 62401, United States

Location

Crossroads Cancer Center

Effingham, Illinois, 62401, United States

Location

AMITA Health Alexian Brothers Medical Center

Elk Grove Village, Illinois, 60007, United States

Location

Illinois CancerCare - Galesburg

Galesburg, Illinois, 61401, United States

Location

AMITA Health Cancer Institute and Outpatient Center

Hinsdale, Illinois, 60521, United States

Location

Presence Saint Mary's Hospital

Kankakee, Illinois, 60901, United States

Location

Carle Physician Group-Mattoon/Charleston

Mattoon, Illinois, 61938, United States

Location

Cancer Care Specialists of O'Fallon

O'Fallon, Illinois, 62269, United States

Location

Illinois CancerCare - Peoria

Peoria, Illinois, 61615, United States

Location

Carle Cancer Center

Urbana, Illinois, 61801, United States

Location

Mercy Hospital

Cedar Rapids, Iowa, 52403, United States

Location

Oncology Associates at Mercy Medical Center

Cedar Rapids, Iowa, 52403, United States

Location

Medical Oncology and Hematology Associates-West Des Moines

Clive, Iowa, 50325, United States

Location

Mercy Cancer Center-West Lakes

Clive, Iowa, 50325, United States

Location

Greater Regional Medical Center

Creston, Iowa, 50801, United States

Location

Iowa Methodist Medical Center

Des Moines, Iowa, 50309, United States

Location

Medical Oncology and Hematology Associates-Des Moines

Des Moines, Iowa, 50314, United States

Location

Medical Oncology and Hematology Associates-Laurel

Des Moines, Iowa, 50314, United States

Location

Mercy Medical Center - Des Moines

Des Moines, Iowa, 50314, United States

Location

Mercy Medical Center-West Lakes

West Des Moines, Iowa, 50266, United States

Location

Cancer Center of Kansas - Chanute

Chanute, Kansas, 66720, United States

Location

Cancer Center of Kansas - Dodge City

Dodge City, Kansas, 67801, United States

Location

Cancer Center of Kansas - Fort Scott

Fort Scott, Kansas, 66701, United States

Location

Cancer Center of Kansas-Independence

Independence, Kansas, 67301, United States

Location

Cancer Center of Kansas-Kingman

Kingman, Kansas, 67068, United States

Location

Lawrence Memorial Hospital

Lawrence, Kansas, 66044, United States

Location

Kansas Institute of Medicine Cancer and Blood Center

Lenexa, Kansas, 66219, United States

Location

Cancer Center of Kansas - Liberal

Liberal, Kansas, 67901, United States

Location

Cancer Center of Kansas - Newton

Newton, Kansas, 67114, United States

Location

Cancer Center of Kansas - Parsons

Parsons, Kansas, 67357, United States

Location

Cancer Center of Kansas - Pratt

Pratt, Kansas, 67124, United States

Location

Cancer Center of Kansas - Salina

Salina, Kansas, 67401, United States

Location

Cancer Center of Kansas - Wellington

Wellington, Kansas, 67152, United States

Location

Associates In Womens Health

Wichita, Kansas, 67208, United States

Location

Cancer Center of Kansas - Wichita Medical Arts Tower

Wichita, Kansas, 67208, United States

Location

Cancer Center of Kansas - Wichita

Wichita, Kansas, 67208, United States

Location

Ascension Via Christi Hospitals Wichita

Wichita, Kansas, 67218, United States

Location

Cancer Center of Kansas - Winfield

Winfield, Kansas, 67156, United States

Location

Harold Alfond Center for Cancer Care

Augusta, Maine, 04330, United States

Location

Waldo County General Hospital

Belfast, Maine, 04915, United States

Location

MaineHealth/SMHC Cancer Care and Blood Disorders-Biddeford

Biddeford, Maine, 04005, United States

Location

Stephens Memorial Hospital

Norway, Maine, 04268, United States

Location

Penobscot Bay Medical Center

Rockport, Maine, 04856, United States

Location

MaineHealth/SMHC Cancer Care and Blood Disorders-Sanford

Sanford, Maine, 04073, United States

Location

Maine Medical Partners-South Portland

South Portland, Maine, 01406, United States

Location

York Hospital

York Village, Maine, 03909, United States

Location

Johns Hopkins University/Sidney Kimmel Cancer Center

Baltimore, Maryland, 21231, United States

Location

UM Upper Chesapeake Medical Center

Bel Air, Maryland, 21014, United States

Location

Walter Reed National Military Medical Center

Bethesda, Maryland, 20889, United States

Location

UMass Memorial Medical Center - University Campus

Worcester, Massachusetts, 01655, United States

Location

Saint Joseph Mercy Hospital

Ann Arbor, Michigan, 48106, United States

Location

IHA Hematology Oncology Consultants-Brighton

Brighton, Michigan, 48114, United States

Location

Saint Joseph Mercy Brighton

Brighton, Michigan, 48114, United States

Location

IHA Hematology Oncology Consultants-Canton

Canton, Michigan, 48188, United States

Location

Saint Joseph Mercy Canton

Canton, Michigan, 48188, United States

Location

IHA Hematology Oncology Consultants-Chelsea

Chelsea, Michigan, 48118, United States

Location

Saint Joseph Mercy Chelsea

Chelsea, Michigan, 48118, United States

Location

Beaumont Hospital - Dearborn

Dearborn, Michigan, 48124, United States

Location

Michigan State University Clinical Center

East Lansing, Michigan, 48824, United States

Location

Spectrum Health at Butterworth Campus

Grand Rapids, Michigan, 49503, United States

Location

West Michigan Cancer Center

Kalamazoo, Michigan, 22787, United States

Location

Spectrum Health Reed City Hospital

Reed City, Michigan, 49677, United States

Location

William Beaumont Hospital-Royal Oak

Royal Oak, Michigan, 48073, United States

Location

Ascension Saint Mary's Hospital

Saginaw, Michigan, 48601, United States

Location

Ascension Providence Hospitals - Southfield

Southfield, Michigan, 48075, United States

Location

William Beaumont Hospital - Troy

Troy, Michigan, 48073, United States

Location

Metro Health Hospital

Wyoming, Michigan, 49519, United States

Location

IHA Hematology Oncology Consultants-Ann Arbor

Ypsilanti, Michigan, 48197, United States

Location

Sanford Joe Lueken Cancer Center

Bemidji, Minnesota, 56601, United States

Location

Mercy Hospital

Coon Rapids, Minnesota, 55433, United States

Location

Saint Luke's Hospital of Duluth

Duluth, Minnesota, 55802, United States

Location

Essentia Health Cancer Center

Duluth, Minnesota, 55805, United States

Location

Essentia Health Saint Mary's Medical Center

Duluth, Minnesota, 55805, United States

Location

Miller-Dwan Hospital

Duluth, Minnesota, 55805, United States

Location

Fairview Southdale Hospital

Edina, Minnesota, 55435, United States

Location

Unity Hospital

Fridley, Minnesota, 55432, United States

Location

Abbott-Northwestern Hospital

Minneapolis, Minnesota, 55407, United States

Location

Minneapolis VA Medical Center

Minneapolis, Minnesota, 55417, United States

Location

Park Nicollet Clinic - Saint Louis Park

Saint Louis Park, Minnesota, 55416, United States

Location

United Hospital

Saint Paul, Minnesota, 55102, United States

Location

Saint Francis Regional Medical Center

Shakopee, Minnesota, 55739, United States

Location

Saint Francis Medical Center

Cape Girardeau, Missouri, 63703, United States

Location

Capital Region Southwest Campus

Jefferson City, Missouri, 65109, United States

Location

Kansas City Veterans Affairs Medical Center

Kansas City, Missouri, 64128, United States

Location

Delbert Day Cancer Institute at PCRMC

Rolla, Missouri, 65401, United States

Location

Mercy Clinic - Rolla - Cancer and Hematology

Rolla, Missouri, 65401, United States

Location

Heartland Regional Medical Center

Saint Joseph, Missouri, 64506, United States

Location

Mercy Hospital Springfield

Springfield, Missouri, 65804, United States

Location

CoxHealth South Hospital

Springfield, Missouri, 65807, United States

Location

Community Hospital of Anaconda

Anaconda, Montana, 59711, United States

Location

Bozeman Deaconess Hospital

Bozeman, Montana, 59715, United States

Location

Benefis Healthcare-Sletten Cancer Institute

Great Falls, Montana, 59406, United States

Location

CHI Health Saint Francis

Grand Island, Nebraska, 68803, United States

Location

OptumCare Cancer Care at Seven Hills

Henderson, Nevada, 89052, United States

Location

OptumCare Cancer Care at Oakey

Las Vegas, Nevada, 89102, United States

Location

Hope Cancer Care of Nevada

Las Vegas, Nevada, 89103, United States

Location

OptumCare Cancer Care at Mountainview

Las Vegas, Nevada, 89128, United States

Location

Alliance for Childhood Diseases/Cure 4 the Kids Foundation

Las Vegas, Nevada, 89135, United States

Location

OptumCare Cancer Care at Fort Apache

Las Vegas, Nevada, 89148, United States

Location

Veterans Administration New Jersey Health Care System

East Orange, New Jersey, 07018-1095, United States

Location

Inspira Medical Center Woodbury

Woodbury, New Jersey, 08096, United States

Location

University of New Mexico Cancer Center

Albuquerque, New Mexico, 87106, United States

Location

Memorial Medical Center-Las Cruces

Las Cruces, New Mexico, 88011, United States

Location

Maimonides Medical Center

Brooklyn, New York, 11219, United States

Location

Roswell Park Cancer Institute

Buffalo, New York, 14263, United States

Location

Arnot Ogden Medical Center/Falck Cancer Center

Elmira, New York, 14905, United States

Location

Glens Falls Hospital

Glens Falls, New York, 12801, United States

Location

North Shore University Hospital

Lake Success, New York, 11042, United States

Location

Northwell Health/Center for Advanced Medicine

Lake Success, New York, 11042, United States

Location

Long Island Jewish Medical Center

New Hyde Park, New York, 11040, United States

Location

Phelps Memorial Hospital Center

Sleepy Hollow, New York, 10591, United States

Location

Montefiore Medical Center - Einstein Campus

The Bronx, New York, 10461, United States

Location

Montefiore Medical Center - Moses Campus

The Bronx, New York, 10467, United States

Location

James J Peters VA Medical Center

The Bronx, New York, 10468, United States

Location

Mission Hospital

Asheville, North Carolina, 28801, United States

Location

Durham VA Medical Center

Durham, North Carolina, 27705, United States

Location

Sanford Bismarck Medical Center

Bismarck, North Dakota, 58501, United States

Location

Sanford Clinic North-Fargo

Fargo, North Dakota, 58102, United States

Location

Sanford Broadway Medical Center

Fargo, North Dakota, 58122, United States

Location

Sanford Roger Maris Cancer Center

Fargo, North Dakota, 58122, United States

Location

Cleveland Clinic Akron General

Akron, Ohio, 44307, United States

Location

MetroHealth Medical Center

Cleveland, Ohio, 44109, United States

Location

Cleveland Clinic Foundation

Cleveland, Ohio, 44195, United States

Location

Cleveland Clinic Cancer Center/Fairview Hospital

Fairview, Ohio, 44111, United States

Location

Cleveland Clinic Cancer Center Independence

Independence, Ohio, 44131, United States

Location

Cleveland Clinic Cancer Center Mansfield

Mansfield, Ohio, 44906, United States

Location

Hillcrest Hospital Cancer Center

Mayfield Heights, Ohio, 44124, United States

Location

North Coast Cancer Care

Sandusky, Ohio, 44870, United States

Location

Cleveland Clinic Wooster Family Health and Surgery Center

Wooster, Ohio, 44691, United States

Location

Cancer Centers of Southwest Oklahoma Research

Lawton, Oklahoma, 73505, United States

Location

University of Oklahoma Health Sciences Center

Oklahoma City, Oklahoma, 73104, United States

Location

Mercy Hospital Oklahoma City

Oklahoma City, Oklahoma, 73120, United States

Location

Kaiser Permanente Northwest

Portland, Oregon, 97227, United States

Location

Oregon Health & Science University

Portland, Oregon, 97239, United States

Location

Lehigh Valley Hospital-Cedar Crest

Allentown, Pennsylvania, 18103, United States

Location

Lehigh Valley Hospital-Muhlenberg

Bethlehem, Pennsylvania, 18017, United States

Location

Geisinger Medical Center

Danville, Pennsylvania, 17821, United States

Location

Easton Hospital

Easton, Pennsylvania, 18042, United States

Location

Ephrata Cancer Center

Ephrata, Pennsylvania, 17522, United States

Location

Adams Cancer Center

Gettysburg, Pennsylvania, 17325, United States

Location

Geisinger Medical Center - Cancer Center Hazleton

Hazleton, Pennsylvania, 18201, United States

Location

Sechler Family Cancer Center

Lebanon, Pennsylvania, 17042, United States

Location

Geisinger Medical Oncology - Lewisburg

Lewisburg, Pennsylvania, 17837, United States

Location

University of Pennsylvania/Abramson Cancer Center

Philadelphia, Pennsylvania, 19104, United States

Location

Phoenixville Hospital

Phoenixville, Pennsylvania, 19460, United States

Location

Pottstown Hospital

Pottstown, Pennsylvania, 19464, United States

Location

Geisinger Cancer Services - Pottsville

Pottsville, Pennsylvania, 17901, United States

Location

Penn State Health Saint Joseph Medical Center

Reading, Pennsylvania, 19605, United States

Location

Geisinger Wyoming Valley/Henry Cancer Center

Wilkes-Barre, Pennsylvania, 18711, United States

Location

UPMC Susquehanna

Williamsport, Pennsylvania, 17701, United States

Location

WellSpan Health-York Hospital

York, Pennsylvania, 17401, United States

Location

Ralph H Johnson VA Medical Center

Charleston, South Carolina, 29401, United States

Location

Prisma Health Cancer Institute - Easley

Easley, South Carolina, 29640, United States

Location

Saint Francis Hospital

Greenville, South Carolina, 29601, United States

Location

Prisma Health System Cancer Institute - Eastside

Greenville, South Carolina, 29605, United States

Location

Prisma Health System Cancer Institute - Faris

Greenville, South Carolina, 29605, United States

Location

Saint Francis Cancer Center

Greenville, South Carolina, 29607, United States

Location

Self Regional Healthcare

Greenwood, South Carolina, 29646, United States

Location

Prisma Health System Cancer Institute - Greer

Greer, South Carolina, 29650, United States

Location

Prisma Health System Cancer Institute - Butternut

Reidville, South Carolina, 29605, United States

Location

Prisma Health System Cancer Institute - Seneca

Seneca, South Carolina, 29672, United States

Location

Spartanburg Medical Center

Spartanburg, South Carolina, 29303, United States

Location

Prisma Health System Cancer Institute - Spartanburg

Spartanburg, South Carolina, 29307, United States

Location

Avera Cancer Institute-Aberdeen

Aberdeen, South Dakota, 57401, United States

Location

Monument Health Rapid City Hospital

Rapid City, South Dakota, 57701, United States

Location

Sanford Cancer Center Oncology Clinic

Sioux Falls, South Dakota, 57104, United States

Location

Avera Cancer Institute

Sioux Falls, South Dakota, 57105, United States

Location

Sanford USD Medical Center - Sioux Falls

Sioux Falls, South Dakota, 57117, United States

Location

Baptist Memorial Hospital and Cancer Center-Memphis

Memphis, Tennessee, 38120, United States

Location

Meharry Medical College

Nashville, Tennessee, 37208, United States

Location

Dell Seton Medical Center at The University of Texas

Austin, Texas, 78701, United States

Location

UT Southwestern/Simmons Cancer Center-Dallas

Dallas, Texas, 75390, United States

Location

UT Southwestern Clinical Center at Richardson/Plano

Richardson, Texas, 75080, United States

Location

University of Texas Health Science Center at San Antonio

San Antonio, Texas, 78229, United States

Location

Augusta Health Center for Cancer and Blood Disorders

Fishersville, Virginia, 22939, United States

Location

MultiCare Auburn Medical Center

Auburn, Washington, 98001, United States

Location

Harrison HealthPartners Hematology and Oncology-Bremerton

Bremerton, Washington, 98310, United States

Location

Harrison Medical Center

Bremerton, Washington, 98310, United States

Location

MultiCare Gig Harbor Medical Park

Gig Harbor, Washington, 98335, United States

Location

Harrison HealthPartners Hematology and Oncology-Poulsbo

Poulsbo, Washington, 98370, United States

Location

MultiCare Good Samaritan Hospital

Puyallup, Washington, 98372, United States

Location

Fred Hutchinson Cancer Research Center

Seattle, Washington, 98109, United States

Location

Seattle Cancer Care Alliance

Seattle, Washington, 98109, United States

Location

University of Washington Medical Center

Seattle, Washington, 98115, United States

Location

MultiCare Tacoma General Hospital

Tacoma, Washington, 98405, United States

Location

West Virginia University Charleston Division

Charleston, West Virginia, 25304, United States

Location

Ascension Southeast Wisconsin Hospital-Elmbrook Campus

Brookfield, Wisconsin, 53045, United States

Location

Aurora Cancer Care-Southern Lakes VLCC

Burlington, Wisconsin, 53105, United States

Location

Marshfield Medical Center - EC Cancer Center

Eau Claire, Wisconsin, 54701, United States

Location

Aurora Health Center-Fond du Lac

Fontana, Wisconsin, 54937, United States

Location

Ascension Saint Francis-Reiman Cancer Center

Franklin, Wisconsin, 53132, United States

Location

Aurora Health Care Germantown Health Center

Germantown, Wisconsin, 53022, United States

Location

Aurora Cancer Care-Grafton

Grafton, Wisconsin, 53024, United States

Location

Saint Vincent Hospital Cancer Center at Saint Mary's

Green Bay, Wisconsin, 53715, United States

Location

Saint Vincent Hospital Cancer Center Green Bay

Green Bay, Wisconsin, 54301, United States

Location

Aurora BayCare Medical Center

Green Bay, Wisconsin, 54311, United States

Location

Aurora Cancer Care-Kenosha South

Kenosha, Wisconsin, 53412, United States

Location

Gundersen Lutheran Medical Center

La Crosse, Wisconsin, 54601, United States

Location

Mayo Clinic Health System-Franciscan Healthcare

La Crosse, Wisconsin, 54601, United States

Location

William S Middleton VA Medical Center

Madison, Wisconsin, 53705, United States

Location

University of Wisconsin Hospital and Clinics

Madison, Wisconsin, 53792, United States

Location

Holy Family Memorial Hospital

Manitowoc, Wisconsin, 54220, United States

Location

Aurora Bay Area Medical Group-Marinette

Marinette, Wisconsin, 54143, United States

Location

Vince Lombardi Cancer Clinic-Marinette

Marinette, Wisconsin, 54143, United States

Location

Marshfield Medical Center - Marshfield

Marshfield, Wisconsin, 54449, United States

Location

Aurora Saint Luke's Medical Center

Milwaukee, Wisconsin, 53215, United States

Location

Aurora Cancer Care-Milwaukee

Milwaukee, Wisconsin, 53226, United States

Location

Aurora Sinai Medical Center

Milwaukee, Wisconsin, 53233, United States

Location

Marshfield Clinic-Minocqua Center

Minocqua, Wisconsin, 54548, United States

Location

Ascension Mercy Hospital

Oshkosh, Wisconsin, 54904, United States

Location

Vince Lombardi Cancer Clinic - Oshkosh

Oshkosh, Wisconsin, 54904, United States

Location

Ascension All Saints Hospital

Racine, Wisconsin, 53405, United States

Location

Aurora Cancer Care-Racine

Racine, Wisconsin, 53406, United States

Location

Marshfield Medical Center - Rice Lake

Rice Lake, Wisconsin, 54868, United States

Location

Vince Lombardi Cancer Clinic-Sheboygan

Sheboygan, Wisconsin, 53081, United States

Location

Marshfield Clinic Stevens Point Center

Stevens Point, Wisconsin, 54482, United States

Location

Aurora Medical Center in Summit

Summit, Wisconsin, 53066, United States

Location

Vince Lombardi Cancer Clinic-Two Rivers

Two Rivers, Wisconsin, 54241, United States

Location

Ascension Medical Group Southeast Wisconsin-Mayfair Road

Wauwatosa, Wisconsin, 53226, United States

Location

Aurora Cancer Care-Milwaukee West

Wauwatosa, Wisconsin, 53226, United States

Location

Aurora West Allis Medical Center

West Allis, Wisconsin, 53227, United States

Location

Marshfield Clinic-Weston Center

Weston, Wisconsin, 54476, United States

Location

Shaare Zedek Medical Center

Jerusalem, 9103102, Israel

Location

Related Publications (4)

  • Gillis N, Colin-Leitzinger C, Tang YH, Otterstatter M, Sherman S, Zhang L, Moscinski LC, Walker ME, Painter JS, Abel GA, Al Baghdadi T, Deeg HJ, Foran JM, Gore SD, Harrington AM, Kroft SH, Liu JJ, Saber W, Virani S, Bejar R, Lindsley RC, Padron E, Walter MJ, Komrojki R, DeZern AE, Sekeres MA. Clinical, Genetic, and Pathologic Variability in Myelodysplastic Syndromes and Precursor Conditions Across Race, Ethnicity, and Sex. Am J Hematol. 2026 Mar 29. doi: 10.1002/ajh.70279. Online ahead of print.

  • DeZern AE, Gillis N, Otterstatter M, Abel GA, Padron E, Deeg HJ, Al Baghdadi T, Liu JJ, Xie Z, Zhang L, Moscinski LC, Kroft SH, Harrington AM, Foran JM, Komrokji RS, Starczynowski DT, Gore SD, Saber W, Bejar R, Lindsley RC, Sherman S, Lee C, DiFronzo NL, Walter MJ, Sekeres MA. A novel approach to defining progression in MDS and precursor myeloid conditions in The MDS Natural History Study. Blood Adv. 2026 Feb 11:bloodadvances.2025018770. doi: 10.1182/bloodadvances.2025018770. Online ahead of print.

  • Abel GA, Hebert D, Lee C, Rollison D, Gillis N, Komrokji R, Foran JM, Liu JJ, Al Baghdadi T, Deeg J, Gore S, Saber W, Wilson S, Otterstatter M, Thompson J, Borchert C, Padron E, DeZern A, Cella D, Sekeres MA. Health-related quality of life and vulnerability among people with myelodysplastic syndromes: a US national study. Blood Adv. 2023 Jul 25;7(14):3506-3515. doi: 10.1182/bloodadvances.2022009000.

  • DeZern AE, Goll JB, Lindsley RC, Bejar R, Wilson SH, Hebert D, Deeg J, Zhang L, Gore S, Al Baghdadi T, Maciejewski J, Liu J, Padron E, Komrojki R, Saber W, Abel G, Kroft SH, Harrington A, Grimes T, Reed H, Fulton RS, DiFronzo NL, Gillis N, Sekeres MA, Walter MJ. Utility of targeted gene sequencing to differentiate myeloid malignancies from other cytopenic conditions. Blood Adv. 2023 Jul 25;7(14):3749-3759. doi: 10.1182/bloodadvances.2022008578.

Related Links

Biospecimen

Retention: SAMPLES WITH DNA

bone marrow, peripheral blood, serum, plasma, eyebrow hairs with attached follicles, buccal cells, skin biopsy

MeSH Terms

Conditions

Myelodysplastic SyndromesCytopeniaMyeloproliferative Disorders

Interventions

Therapeutics

Condition Hierarchy (Ancestors)

Bone Marrow DiseasesHematologic DiseasesHemic and Lymphatic Diseases

Study Officials

  • Mikkael Sekeres, MD, MS

    University of Miami

    STUDY CHAIR
  • Amy DeZern, MD, MHS

    Johns Hopkins University

    STUDY CHAIR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Target Duration
9 Years
Sponsor Type
NIH
Responsible Party
SPONSOR

Study Record Dates

First Submitted

May 2, 2016

First Posted

May 17, 2016

Study Start

June 13, 2016

Primary Completion

July 31, 2025

Study Completion

December 31, 2025

Last Updated

February 3, 2026

Record last verified: 2025-11

Locations