The National Myelodysplastic Syndromes (MDS) Study (MDS)

January 30, 2026 updated by: National Heart, Lung, and Blood Institute (NHLBI)

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.

Study Overview

Status

Completed

Conditions

Myelodysplastic Syndromes (MDS)

Intervention / Treatment

Other: Therapeutic

Detailed Description

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.

Study Type

Observational

Enrollment (Actual)

2115

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

Israel
- - Jerusalem, Israel, 9103102
    - Shaare Zedek Medical Center
United States
- California
  - Anaheim, California, United States, 92806
    - Kaiser Permanente-Anaheim
  - Baldwin Park, California, United States, 91706
    - Kaiser Permanente-Baldwin Park
  - Bellflower, California, United States, 90706
    - Kaiser Permanente-Bellflower
  - Fontana, California, United States, 92335
    - Kaiser Permanente-Fontana
  - Harbor City, California, United States, 90710
    - Kaiser Permanente - South Bay
  - Irvine, California, United States, 92618
    - Kaiser Permanente-Irvine
  - Long Beach, California, United States, 90822
    - Tibor Rubin VA Medical Center
  - Los Angeles, California, United States, 90027
    - Kaiser Permanente Los Angeles Medical Center
  - Los Angeles, California, United States, 90034
    - Kaiser Permanente-Cadillac
  - Palo Alto, California, United States, 94304
    - VA Palo Alto Health Care System
  - Panorama City, California, United States, 91402
    - Kaiser Permanente - Panorama City
  - Rancho Mirage, California, United States, 92270
    - Eisenhower Medical Center
  - Riverside, California, United States, 92505
    - Kaiser Permanente-Riverside
  - San Diego, California, United States, 92120
    - Kaiser Permanente-San Diego Zion
  - San Francisco, California, United States, 94121
    - Veterans Affairs Medical Center - San Francisco
  - San Marcos, California, United States, 92078
    - Kaiser Permanente-San Marcos
  - Woodland Hills, California, United States, 91367
    - Kaiser Permanente-Woodland Hills
- Colorado
  - Aurora, Colorado, United States, 80045
    - Rocky Mountain Regional VA Medical Center
- Connecticut
  - New Haven, Connecticut, United States, 06520
    - Yale University
  - New Haven, Connecticut, United States, 06511
    - Smilow Cancer Center/Yale-New Haven Hospital
  - West Haven, Connecticut, United States, 06516
    - Veterans Affairs Connecticut Healthcare System-West Haven Campus
- Delaware
  - Newark, Delaware, United States, 19713
    - Helen F Graham Cancer Center
  - Newark, Delaware, United States, 19713
    - Medical Oncology Hematology Consultants PA
  - Newark, Delaware, United States, 19718
    - Christiana Care Health System-Christiana Hospital
  - Newark, Delaware, United States, 19713
    - Regional Hematology and Oncology PA
- Florida
  - Jacksonville, Florida, United States, 32207
    - Baptist MD Anderson Cancer Center
  - Jacksonville, Florida, United States, 32224
    - Mayo Clinic in Florida
  - Lakeland, Florida, United States, 33805
    - Lakeland Regional Health Hollis Cancer Center
  - Tampa, Florida, United States, 33612
    - Moffitt Cancer Center
  - Vero Beach, Florida, United States, 32960
    - Indian River Medical Center
- Georgia
  - Atlanta, Georgia, United States, 30342
    - Northside Hospital
  - Augusta, Georgia, United States, 30912
    - Augusta University Medical Center
  - Decatur, Georgia, United States, 30033
    - Atlanta VA Medical Center
  - Duluth, Georgia, United States, 30096
    - Northside Hospital - Duluth
  - Gainesville, Georgia, United States, 30501
    - Northeast Georgia Medical Center-Gainesville
  - Lawrenceville, Georgia, United States, 30046
    - Northside Hospital - Gwinnett
  - Savannah, Georgia, United States, 31405
    - Lewis Cancer and Research Pavilion at Saint Joseph's/Candler
  - Snellville, Georgia, United States, 30078
    - Suburban Hematology Oncology Associates - Snellville
- Hawaii
  - Honolulu, Hawaii, United States, 96813
    - Queen's Medical Center
  - Honolulu, Hawaii, United States, 96813
    - Straub Clinic and Hospital
  - Honolulu, Hawaii, United States, 96813
    - University of Hawaii Cancer Center
  - Honolulu, Hawaii, United States, 96817
    - Queen's Cancer Center - Kuakini
  - Honolulu, Hawaii, United States, 96826
    - Kapiolani Medical Center for Women and Children
  - Honolulu, Hawaii, United States, 96813
    - Queen's Cancer Center - POB I
  - Honolulu, Hawaii, United States, 96817
    - Hawaii Cancer Care Inc-POB II
  - Honolulu, Hawaii, United States, 96817
    - OnCare Hawaii - Liliha
  - ‘Aiea, Hawaii, United States, 96701
    - Pali Momi Medical Center
  - ‘Aiea, Hawaii, United States, 96701
    - Queen's Cancer Center - Pearlridge
- Idaho
  - Coeur d'Alene, Idaho, United States, 83814
    - Kootenai Medical Center
  - Post Falls, Idaho, United States, 83854
    - Kootenai Cancer Center
  - Sandpoint, Idaho, United States, 83864
    - Kootenai Cancer Clinic
- Illinois
  - Bloomington, Illinois, United States, 61704
    - Illinois CancerCare - Bloomington
  - Carbondale, Illinois, United States, 62901
    - Memorial Hospital of Carbondale
  - Carterville, Illinois, United States, 62918
    - SIH Cancer Institute
  - Centralia, Illinois, United States, 62801
    - Centralia Oncology Clinic
  - Danville, Illinois, United States, 61832
    - Carle on Vermilion
  - Decatur, Illinois, United States, 62522
    - Decatur Memorial Hospital
  - Decatur, Illinois, United States, 62568
    - Cancer Care Specialists of Central Illinois - Decatur
  - Effingham, Illinois, United States, 62401
    - Crossroads Cancer Center
  - Effingham, Illinois, United States, 62401
    - Carle Physician Group-Effingham
  - Elk Grove Village, Illinois, United States, 60007
    - AMITA Health Alexian Brothers Medical Center
  - Galesburg, Illinois, United States, 61401
    - Illinois CancerCare - Galesburg
  - Hinsdale, Illinois, United States, 60521
    - AMITA Health Cancer Institute and Outpatient Center
  - Kankakee, Illinois, United States, 60901
    - Presence Saint Mary's Hospital
  - Mattoon, Illinois, United States, 61938
    - Carle Physician Group-Mattoon/Charleston
  - O'Fallon, Illinois, United States, 62269
    - Cancer Care Specialists of O'Fallon
  - Peoria, Illinois, United States, 61615
    - Illinois CancerCare - Peoria
  - Urbana, Illinois, United States, 61801
    - Carle Cancer Center
- Iowa
  - Cedar Rapids, Iowa, United States, 52403
    - Mercy Hospital
  - Cedar Rapids, Iowa, United States, 52403
    - Oncology Associates at Mercy Medical Center
  - Clive, Iowa, United States, 50325
    - Mercy Cancer Center-West Lakes
  - Clive, Iowa, United States, 50325
    - Medical Oncology and Hematology Associates-West Des Moines
  - Creston, Iowa, United States, 50801
    - Greater Regional Medical Center
  - Des Moines, Iowa, United States, 50309
    - Iowa Methodist Medical Center
  - Des Moines, Iowa, United States, 50314
    - Mercy Medical Center - Des Moines
  - Des Moines, Iowa, United States, 50314
    - Medical Oncology and Hematology Associates-Laurel
  - Des Moines, Iowa, United States, 50314
    - Medical Oncology and Hematology Associates-Des Moines
  - West Des Moines, Iowa, United States, 50266
    - Mercy Medical Center-West Lakes
- Kansas
  - Chanute, Kansas, United States, 66720
    - Cancer Center of Kansas - Chanute
  - Dodge City, Kansas, United States, 67801
    - Cancer Center of Kansas - Dodge City
  - Fort Scott, Kansas, United States, 66701
    - Cancer Center of Kansas - Fort Scott
  - Independence, Kansas, United States, 67301
    - Cancer Center of Kansas-Independence
  - Kingman, Kansas, United States, 67068
    - Cancer Center of Kansas-Kingman
  - Lawrence, Kansas, United States, 66044
    - Lawrence Memorial Hospital
  - Lenexa, Kansas, United States, 66219
    - Kansas Institute of Medicine Cancer and Blood Center
  - Liberal, Kansas, United States, 67901
    - Cancer Center of Kansas - Liberal
  - Newton, Kansas, United States, 67114
    - Cancer Center of Kansas - Newton
  - Parsons, Kansas, United States, 67357
    - Cancer Center of Kansas - Parsons
  - Pratt, Kansas, United States, 67124
    - Cancer Center of Kansas - Pratt
  - Salina, Kansas, United States, 67401
    - Cancer Center of Kansas - Salina
  - Wellington, Kansas, United States, 67152
    - Cancer Center of Kansas - Wellington
  - Wichita, Kansas, United States, 67208
    - Associates In Womens Health
  - Wichita, Kansas, United States, 67208
    - Cancer Center of Kansas - Wichita Medical Arts Tower
  - Wichita, Kansas, United States, 67208
    - Cancer Center of Kansas - Wichita
  - Wichita, Kansas, United States, 67218
    - Ascension Via Christi Hospitals Wichita
  - Winfield, Kansas, United States, 67156
    - Cancer Center of Kansas - Winfield
- Maine
  - Augusta, Maine, United States, 04330
    - Harold Alfond Center for Cancer Care
  - Belfast, Maine, United States, 04915
    - Waldo County General Hospital
  - Biddeford, Maine, United States, 04005
    - MaineHealth/SMHC Cancer Care and Blood Disorders-Biddeford
  - Norway, Maine, United States, 04268
    - Stephens Memorial Hospital
  - Rockport, Maine, United States, 04856
    - Penobscot Bay Medical Center
  - Sanford, Maine, United States, 04073
    - MaineHealth/SMHC Cancer Care and Blood Disorders-Sanford
  - South Portland, Maine, United States, 01406
    - Maine Medical Partners-South Portland
  - York Village, Maine, United States, 03909
    - York Hospital
- Maryland
  - Baltimore, Maryland, United States, 21231
    - Johns Hopkins University/Sidney Kimmel Cancer Center
  - Bel Air, Maryland, United States, 21014
    - UM Upper Chesapeake Medical Center
  - Bethesda, Maryland, United States, 20889
    - Walter Reed National Military Medical Center
- Massachusetts
  - Worcester, Massachusetts, United States, 01655
    - UMass Memorial Medical Center - University Campus
- Michigan
  - Ann Arbor, Michigan, United States, 48106
    - Saint Joseph Mercy Hospital
  - Brighton, Michigan, United States, 48114
    - Saint Joseph Mercy Brighton
  - Brighton, Michigan, United States, 48114
    - IHA Hematology Oncology Consultants-Brighton
  - Canton, Michigan, United States, 48188
    - Saint Joseph Mercy Canton
  - Canton, Michigan, United States, 48188
    - IHA Hematology Oncology Consultants-Canton
  - Chelsea, Michigan, United States, 48118
    - Saint Joseph Mercy Chelsea
  - Chelsea, Michigan, United States, 48118
    - IHA Hematology Oncology Consultants-Chelsea
  - Dearborn, Michigan, United States, 48124
    - Beaumont Hospital - Dearborn
  - East Lansing, Michigan, United States, 48824
    - Michigan State University Clinical Center
  - Grand Rapids, Michigan, United States, 49503
    - Spectrum Health at Butterworth Campus
  - Kalamazoo, Michigan, United States, 22787
    - West Michigan Cancer Center
  - Reed City, Michigan, United States, 49677
    - Spectrum Health Reed City Hospital
  - Royal Oak, Michigan, United States, 48073
    - William Beaumont Hospital-Royal Oak
  - Saginaw, Michigan, United States, 48601
    - Ascension Saint Mary's Hospital
  - Southfield, Michigan, United States, 48075
    - Ascension Providence Hospitals - Southfield
  - Troy, Michigan, United States, 48073
    - William Beaumont Hospital - Troy
  - Wyoming, Michigan, United States, 49519
    - Metro Health Hospital
  - Ypsilanti, Michigan, United States, 48197
    - IHA Hematology Oncology Consultants-Ann Arbor
- Minnesota
  - Bemidji, Minnesota, United States, 56601
    - Sanford Joe Lueken Cancer Center
  - Coon Rapids, Minnesota, United States, 55433
    - Mercy Hospital
  - Duluth, Minnesota, United States, 55805
    - Essentia Health Cancer Center
  - Duluth, Minnesota, United States, 55805
    - Essentia Health Saint Mary's Medical Center
  - Duluth, Minnesota, United States, 55805
    - Miller-Dwan Hospital
  - Duluth, Minnesota, United States, 55802
    - Saint Luke's Hospital of Duluth
  - Edina, Minnesota, United States, 55435
    - Fairview Southdale Hospital
  - Fridley, Minnesota, United States, 55432
    - Unity Hospital
  - Minneapolis, Minnesota, United States, 55407
    - Abbott-Northwestern Hospital
  - Minneapolis, Minnesota, United States, 55417
    - Minneapolis VA Medical Center
  - Saint Louis Park, Minnesota, United States, 55416
    - Park Nicollet Clinic - Saint Louis Park
  - Saint Paul, Minnesota, United States, 55102
    - United Hospital
  - Shakopee, Minnesota, United States, 55739
    - Saint Francis Regional Medical Center
- Missouri
  - Cape Girardeau, Missouri, United States, 63703
    - Saint Francis Medical Center
  - Jefferson City, Missouri, United States, 65109
    - Capital Region Southwest Campus
  - Kansas City, Missouri, United States, 64128
    - Kansas City Veterans Affairs Medical Center
  - Rolla, Missouri, United States, 65401
    - Delbert Day Cancer Institute at PCRMC
  - Rolla, Missouri, United States, 65401
    - Mercy Clinic - Rolla - Cancer and Hematology
  - Saint Joseph, Missouri, United States, 64506
    - Heartland Regional Medical Center
  - Springfield, Missouri, United States, 65807
    - CoxHealth South Hospital
  - Springfield, Missouri, United States, 65804
    - Mercy Hospital Springfield
- Montana
  - Anaconda, Montana, United States, 59711
    - Community Hospital of Anaconda
  - Bozeman, Montana, United States, 59715
    - Bozeman Deaconess Hospital
  - Great Falls, Montana, United States, 59406
    - Benefis Healthcare-Sletten Cancer Institute
- Nebraska
  - Grand Island, Nebraska, United States, 68803
    - CHI Health Saint Francis
- Nevada
  - Henderson, Nevada, United States, 89052
    - OptumCare Cancer Care at Seven Hills
  - Las Vegas, Nevada, United States, 89128
    - OptumCare Cancer Care at MountainView
  - Las Vegas, Nevada, United States, 89135
    - Alliance for Childhood Diseases/Cure 4 the Kids Foundation
  - Las Vegas, Nevada, United States, 89148
    - OptumCare Cancer Care at Fort Apache
  - Las Vegas, Nevada, United States, 89102
    - OptumCare Cancer Care at Oakey
  - Las Vegas, Nevada, United States, 89103
    - Hope Cancer Care of Nevada
- New Jersey
  - East Orange, New Jersey, United States, 07018-1095
    - Veterans Administration New Jersey Health Care System
  - Woodbury, New Jersey, United States, 08096
    - Inspira Medical Center Woodbury
- New Mexico
  - Albuquerque, New Mexico, United States, 87106
    - University of New Mexico Cancer Center
  - Las Cruces, New Mexico, United States, 88011
    - Memorial Medical Center-Las Cruces
- New York
  - Brooklyn, New York, United States, 11219
    - Maimonides Medical Center
  - Buffalo, New York, United States, 14263
    - Roswell Park Cancer Institute
  - Elmira, New York, United States, 14905
    - Arnot Ogden Medical Center/Falck Cancer Center
  - Glens Falls, New York, United States, 12801
    - Glens Falls Hospital
  - Lake Success, New York, United States, 11042
    - Northwell Health/Center for Advanced Medicine
  - Lake Success, New York, United States, 11042
    - North Shore University Hospital
  - New Hyde Park, New York, United States, 11040
    - Long Island Jewish Medical Center
  - Sleepy Hollow, New York, United States, 10591
    - Phelps Memorial Hospital Center
  - The Bronx, New York, United States, 10467
    - Montefiore Medical Center - Moses Campus
  - The Bronx, New York, United States, 10468
    - James J Peters VA Medical Center
  - The Bronx, New York, United States, 10461
    - Montefiore Medical Center - Einstein Campus
- North Carolina
  - Asheville, North Carolina, United States, 28801
    - Mission Hospital
  - Durham, North Carolina, United States, 27705
    - Durham VA Medical Center
- North Dakota
  - Bismarck, North Dakota, United States, 58501
    - Sanford Bismarck Medical Center
  - Fargo, North Dakota, United States, 58122
    - Sanford Roger Maris Cancer Center
  - Fargo, North Dakota, United States, 58122
    - Sanford Broadway Medical Center
  - Fargo, North Dakota, United States, 58102
    - Sanford Clinic North-Fargo
- Ohio
  - Akron, Ohio, United States, 44307
    - Cleveland Clinic Akron General
  - Cleveland, Ohio, United States, 44109
    - MetroHealth Medical Center
  - Cleveland, Ohio, United States, 44195
    - Cleveland Clinic Foundation
  - Fairview, Ohio, United States, 44111
    - Cleveland Clinic Cancer Center/Fairview Hospital
  - Independence, Ohio, United States, 44131
    - Cleveland Clinic Cancer Center Independence
  - Mansfield, Ohio, United States, 44906
    - Cleveland Clinic Cancer Center Mansfield
  - Mayfield Heights, Ohio, United States, 44124
    - Hillcrest Hospital Cancer Center
  - Sandusky, Ohio, United States, 44870
    - North Coast Cancer Care
  - Wooster, Ohio, United States, 44691
    - Cleveland Clinic Wooster Family Health and Surgery Center
- Oklahoma
  - Lawton, Oklahoma, United States, 73505
    - Cancer Centers of Southwest Oklahoma Research
  - Oklahoma City, Oklahoma, United States, 73104
    - University of Oklahoma Health Sciences Center
  - Oklahoma City, Oklahoma, United States, 73120
    - Mercy Hospital Oklahoma City
- Oregon
  - Portland, Oregon, United States, 97239
    - Oregon Health & Science University
  - Portland, Oregon, United States, 97227
    - Kaiser Permanente Northwest
- Pennsylvania
  - Allentown, Pennsylvania, United States, 18103
    - Lehigh Valley Hospital-Cedar Crest
  - Bethlehem, Pennsylvania, United States, 18017
    - Lehigh Valley Hospital-Muhlenberg
  - Danville, Pennsylvania, United States, 17821
    - Geisinger Medical Center
  - Easton, Pennsylvania, United States, 18042
    - Easton Hospital
  - Ephrata, Pennsylvania, United States, 17522
    - Ephrata Cancer Center
  - Gettysburg, Pennsylvania, United States, 17325
    - Adams Cancer Center
  - Hazleton, Pennsylvania, United States, 18201
    - Geisinger Medical Center - Cancer Center Hazleton
  - Lebanon, Pennsylvania, United States, 17042
    - Sechler Family Cancer Center
  - Lewisburg, Pennsylvania, United States, 17837
    - Geisinger Medical Oncology - Lewisburg
  - Philadelphia, Pennsylvania, United States, 19104
    - University of Pennsylvania/Abramson Cancer Center
  - Phoenixville, Pennsylvania, United States, 19460
    - Phoenixville Hospital
  - Pottstown, Pennsylvania, United States, 19464
    - Pottstown Hospital
  - Pottsville, Pennsylvania, United States, 17901
    - Geisinger Cancer Services - Pottsville
  - Reading, Pennsylvania, United States, 19605
    - Penn State Health Saint Joseph Medical Center
  - Wilkes-Barre, Pennsylvania, United States, 18711
    - Geisinger Wyoming Valley/Henry Cancer Center
  - Williamsport, Pennsylvania, United States, 17701
    - UPMC Susquehanna
  - York, Pennsylvania, United States, 17401
    - WellSpan Health-York Hospital
- South Carolina
  - Charleston, South Carolina, United States, 29401
    - Ralph H Johnson VA Medical Center
  - Easley, South Carolina, United States, 29640
    - Prisma Health Cancer Institute - Easley
  - Greenville, South Carolina, United States, 29607
    - Saint Francis Cancer Center
  - Greenville, South Carolina, United States, 29601
    - Saint Francis Hospital
  - Greenville, South Carolina, United States, 29605
    - Prisma Health System Cancer Institute - Eastside
  - Greenville, South Carolina, United States, 29605
    - Prisma Health System Cancer Institute - Faris
  - Greenwood, South Carolina, United States, 29646
    - Self Regional Healthcare
  - Greer, South Carolina, United States, 29650
    - Prisma Health System Cancer Institute - Greer
  - Reidville, South Carolina, United States, 29605
    - Prisma Health System Cancer Institute - Butternut
  - Seneca, South Carolina, United States, 29672
    - Prisma Health System Cancer Institute - Seneca
  - Spartanburg, South Carolina, United States, 29303
    - Spartanburg Medical Center
  - Spartanburg, South Carolina, United States, 29307
    - Prisma Health System Cancer Institute - Spartanburg
- South Dakota
  - Aberdeen, South Dakota, United States, 57401
    - Avera Cancer Institute-Aberdeen
  - Rapid City, South Dakota, United States, 57701
    - Monument Health Rapid City Hospital
  - Sioux Falls, South Dakota, United States, 57105
    - Avera Cancer Institute
  - Sioux Falls, South Dakota, United States, 57104
    - Sanford Cancer Center Oncology Clinic
  - Sioux Falls, South Dakota, United States, 57117
    - Sanford USD Medical Center - Sioux Falls
- Tennessee
  - Memphis, Tennessee, United States, 38120
    - Baptist Memorial Hospital and Cancer Center-Memphis
  - Nashville, Tennessee, United States, 37208
    - Meharry Medical College
- Texas
  - Austin, Texas, United States, 78701
    - Dell Seton Medical Center at The University of Texas
  - Dallas, Texas, United States, 75390
    - UT Southwestern/Simmons Cancer Center-Dallas
  - Richardson, Texas, United States, 75080
    - UT Southwestern Clinical Center at Richardson/Plano
  - San Antonio, Texas, United States, 78229
    - University of Texas Health Science Center at San Antonio
- Virginia
  - Fishersville, Virginia, United States, 22939
    - Augusta Health Center for Cancer and Blood Disorders
- Washington
  - Auburn, Washington, United States, 98001
    - MultiCare Auburn Medical Center
  - Bremerton, Washington, United States, 98310
    - Harrison HealthPartners Hematology and Oncology-Bremerton
  - Bremerton, Washington, United States, 98310
    - Harrison Medical Center
  - Gig Harbor, Washington, United States, 98335
    - MultiCare Gig Harbor Medical Park
  - Poulsbo, Washington, United States, 98370
    - Harrison HealthPartners Hematology and Oncology-Poulsbo
  - Puyallup, Washington, United States, 98372
    - MultiCare Good Samaritan Hospital
  - Seattle, Washington, United States, 98109
    - Fred Hutchinson Cancer Research Center
  - Seattle, Washington, United States, 98109
    - Seattle Cancer Care Alliance
  - Seattle, Washington, United States, 98115
    - University of Washington Medical Center
  - Tacoma, Washington, United States, 98405
    - MultiCare Tacoma General Hospital
- West Virginia
  - Charleston, West Virginia, United States, 25304
    - West Virginia University Charleston Division
- Wisconsin
  - Brookfield, Wisconsin, United States, 53045
    - Ascension Southeast Wisconsin Hospital-Elmbrook Campus
  - Burlington, Wisconsin, United States, 53105
    - Aurora Cancer Care-Southern Lakes VLCC
  - Eau Claire, Wisconsin, United States, 54701
    - Marshfield Medical Center - EC Cancer Center
  - Fontana, Wisconsin, United States, 54937
    - Aurora Health Center-Fond du Lac
  - Franklin, Wisconsin, United States, 53132
    - Ascension Saint Francis-Reiman Cancer Center
  - Germantown, Wisconsin, United States, 53022
    - Aurora Health Care Germantown Health Center
  - Grafton, Wisconsin, United States, 53024
    - Aurora Cancer Care-Grafton
  - Green Bay, Wisconsin, United States, 54311
    - Aurora BayCare Medical Center
  - Green Bay, Wisconsin, United States, 54301
    - Saint Vincent Hospital Cancer Center Green Bay
  - Green Bay, Wisconsin, United States, 53715
    - Saint Vincent Hospital Cancer Center at Saint Mary's
  - Kenosha, Wisconsin, United States, 53412
    - Aurora Cancer Care-Kenosha South
  - La Crosse, Wisconsin, United States, 54601
    - Gundersen Lutheran Medical Center
  - La Crosse, Wisconsin, United States, 54601
    - Mayo Clinic Health System-Franciscan Healthcare
  - Madison, Wisconsin, United States, 53792
    - University of Wisconsin Hospital and Clinics
  - Madison, Wisconsin, United States, 53705
    - William S Middleton VA Medical Center
  - Manitowoc, Wisconsin, United States, 54220
    - Holy Family Memorial Hospital
  - Marinette, Wisconsin, United States, 54143
    - Aurora Bay Area Medical Group-Marinette
  - Marinette, Wisconsin, United States, 54143
    - Vince Lombardi Cancer Clinic-Marinette
  - Marshfield, Wisconsin, United States, 54449
    - Marshfield Medical Center - Marshfield
  - Milwaukee, Wisconsin, United States, 53215
    - Aurora Saint Luke's Medical Center
  - Milwaukee, Wisconsin, United States, 53233
    - Aurora Sinai Medical Center
  - Milwaukee, Wisconsin, United States, 53226
    - Aurora Cancer Care-Milwaukee
  - Minocqua, Wisconsin, United States, 54548
    - Marshfield Clinic-Minocqua Center
  - Oshkosh, Wisconsin, United States, 54904
    - Ascension Mercy Hospital
  - Oshkosh, Wisconsin, United States, 54904
    - Vince Lombardi Cancer Clinic - Oshkosh
  - Racine, Wisconsin, United States, 53406
    - Aurora Cancer Care-Racine
  - Racine, Wisconsin, United States, 53405
    - Ascension All Saints Hospital
  - Rice Lake, Wisconsin, United States, 54868
    - Marshfield Medical Center - Rice Lake
  - Sheboygan, Wisconsin, United States, 53081
    - Vince Lombardi Cancer Clinic-Sheboygan
  - Stevens Point, Wisconsin, United States, 54482
    - Marshfield Clinic Stevens Point Center
  - Summit, Wisconsin, United States, 53066
    - Aurora Medical Center in Summit
  - Two Rivers, Wisconsin, United States, 54241
    - Vince Lombardi Cancer Clinic-Two Rivers
  - Wauwatosa, Wisconsin, United States, 53226
    - Aurora Cancer Care-Milwaukee West
  - Wauwatosa, Wisconsin, United States, 53226
    - Ascension Medical Group Southeast Wisconsin-Mayfair Road
  - West Allis, Wisconsin, United States, 53227
    - Aurora West Allis Medical Center
  - Weston, Wisconsin, United States, 54476
    - Marshfield Clinic-Weston Center

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

14 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

Sampling Method

Non-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

Description

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 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.

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)

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Observational Models: Cohort
Time Perspectives: Prospective

Number of groups / cohorts

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
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 Observational Study
Cross-sectional Participants who do not have MDS, MDS/MPN overlap disorder, or ICUS and have the baseline visit only	Other: Therapeutic Observational Study

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Number of patients dying Time Frame: Through study completion, an average of 3 years	Deaths will be reported on study case report forms	Through study completion, an average of 3 years

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Number of participants progressing to Acute Myeloid Leukemia (AML) Time Frame: Through study completion, an average of 3 years	Progression to AML will be reported on study case report forms	Through study completion, an average of 3 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

National Heart, Lung, and Blood Institute (NHLBI)

Collaborators

National Cancer Institute (NCI)

Investigators

Study Chair: Mikkael Sekeres, MD, MS, University of Miami
Study Chair: Amy DeZern, MD, MHS, Johns Hopkins University

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Helpful Links

Website for The National Myelodysplastic Syndromes Natural History Study

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

June 13, 2016

Primary Completion (Actual)

July 31, 2025

Study Completion (Actual)

December 31, 2025

Study Registration Dates

First Submitted

May 2, 2016

First Submitted That Met QC Criteria

May 16, 2016

First Posted (Estimated)

May 17, 2016

Study Record Updates

Last Update Posted (Actual)

February 3, 2026

Last Update Submitted That Met QC Criteria

January 30, 2026

Last Verified

November 1, 2025

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

NHLBI-MDS

Drug and device information, study documents

product manufactured in and exported from the U.S.

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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Study Overview

Status

Conditions

Intervention / Treatment

Detailed Description

Study Type

Enrollment (Actual)

Contacts and Locations

Study Locations

Participation Criteria

Eligibility Criteria

Ages Eligible for Study

Accepts Healthy Volunteers

Sampling Method

Study Population

Description

Study Plan

How is the study designed?

Design Details

Number of groups / cohorts

Cohorts and Interventions

Group / Cohort

Intervention / Treatment

What is the study measuring?

Primary Outcome Measures

Outcome Measure

Measure Description

Time Frame

Secondary Outcome Measures

Outcome Measure

Measure Description

Time Frame

Collaborators and Investigators

Sponsor

Collaborators

Investigators

Publications and helpful links

General Publications

Helpful Links

Study record dates

Study Major Dates

Study Start (Actual)

Primary Completion (Actual)

Study Completion (Actual)

Study Registration Dates

First Submitted

First Submitted That Met QC Criteria

First Posted (Estimated)

Study Record Updates

Last Update Posted (Actual)

Last Update Submitted That Met QC Criteria

Last Verified

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

Drug and device information, study documents

product manufactured in and exported from the U.S.

Clinical Trials on Myelodysplastic Syndromes (MDS)

Clinical Trials on Therapeutic

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