Wide variability and inconsistency in reporting of results of Myelodysplastic Syndromes/neoplasms (MDS) clinical trials: An icMDS systematic review of published manuscripts

T Ted Getz (1Yale University and Yale Comprehensive Cancer Center, Department of Internal Medicine, Section of Medical Oncology and Hematology, New Haven, United States) K Kelly Pugh (2The Ohio State University Comprehensive Cancer Center/James Cancer Hospital, The Ohio State University, Division of Hematology, Columbus, United States) A Andrew Brunner (3Dana-Farber Cancer Institute, Boston, United States) J Jan Philipp Bewersdorf A Amy DeZern (1Johns Hopkins University School of Medicine, Oncology, Baltimore, United States) T Tariq Kewan (1Cleveland Clinic, Department of Translational Hematology and Oncology Research, Cleveland, United States) U Uma Borate (2Ohio State University Comprehensive Cancer Center, Columbus, United States) U Uwe Platzbecker M Mikkael Sekeres (13Sylvester Cancer Center, University of Miami Health System, Miami, United States) A Andrew Wei (3Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia) S Shahram Kordasti R Rena Buckstein G Gail Roboz (3Weill Cornell Medicine and The New York Presbyterian Hospital, New York, United States) M Michael Savona (7Vanderbilt-Ingram Cancer Center, Vanderbilt University School of Medicine, Nashville, United States) S Sanam Loghavi R Robert Hasserjian (13Massachusetts General Hospital, Department of Pathology, Boston, United States) P Pierre Fenaux D David Sallman (Moffitt Cancer Cancer and Research Institute, Tampa, Florida, United States) C Christopher Hourigan (13Fralin biomedical research institute, Virgina Tech University, Roanoke, United States) M Matteo Della Porta (1IRCCS Humanitas Research Hospital, AI Center, Rozzano, Italy) S Stephen Nimer (6Sylvester Comprehensive Cancer Center, University of Miami Miller School of Medicine, Division of Hematology, Miami, United States) R Richard Little (27National Cancer Institute, National Institutes of Health, Bethesda, United States) V Valeria Santini (7DMSC University of Florence, AOUC, MDS Unit, Hematology, Florence, Italy) F Fabio Efficace (1Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy) J Justin Taylor O Olatoyosi Odenike (University of Chicago Medicine and Comprehensive Cancer Center, Chicago) T Tae Kon Kim (1Vanderbilt University Medical Center, Division of Hematology/Oncology, Department of Medicine, Nashville, United States) S Stephanie Halene (Department of Pathology, Yale School of Medicine) R Rami Komrokji (Moffitt Cancer Cancer and Research Institute, Tampa, Florida, United States) E Elizabeth Griffiths (8Roswell Park Comprehensive Cancer Center, Buffalo, United States) P Peter Greenberg (1Stanford University School of Medicine, Medicine, Stanford, United States) M Mina Xu (1Yale School of Medicine, Hematology/Oncology, New Haven, United States) Z Zhuoer Xie (Moffitt Cancer Center, Tampa, Florida, United States) R Rafael Bejar G Guillermo Sanz (26Hospital Universitario y Politécnico La Fe, Hematology Department, Valencia, Spain) M Mrinal Patnaik (5Mayo Clinic, Rochester, United States) M Maria E. Figueroa (6Sylvester Comprehensive Cancer Center, University of Miami Miller School of Medicine, Division of Hematology, Miami, United States) H Hetty Carraway (1Cleveland Clinic, Internal Medicine, Cleveland, United States) O Omar Abdel-Wahab (Molecular Pharmacology Program, Sloan Kettering Institute) D Daniel Starczynowski (3Cincinnati Children's Hospital Medical Center, Division of Experimental Hematology, Cincinnati, United States) E Eric Padron (Moffitt Cancer Cancer and Research Institute, Tampa, Florida, United States) J Jacqueline Boultwood S Steven Gore N Naval Daver (1The University of Texas MD Anderson Cancer Center, Houston, TX) J Jane Churpek (2University of Wisconsin-Madison, Madison, United States) R Ravi Majeti (1Department of Medicine, Division of Hematology, Stanford University School of Medicine, Stanford, United States) J John Bennett (Department of Pathology) A Alan List (7Halia Therapeutics, Inc., Lehi, Utah, United States) A Adrian Mosquera Orgueira (36Instituto de Investigacións Sanitarias de Santiago, Complexo Hospitalario Universitario de Santiago de Compostela, Department of Hematology, Santiago de Compostela, Spain) K Klaus Metzeler (4Department of Hematology, Cell Therapy, Hemostaseology and Infectious Diseases, University of Leipzig, Leipzig, Germany) F Francesc Sole (8Institut de Recerca Contra la Leucèmia Josep Carreras, Barcelona, Spain) L Lisa Pleyer A Arjan van de Loosdrecht (12Amsterdam University, Amsterdam, Netherlands) T Thomas Cluzeau (15Service d’Hématologie, Centre Hospitalier Universitaire de Nice, Nice, France) D David Steensma (42Ajax Therapeutics, Cambridge, United States) G Ghulam Mufti (43King's College, London, United Kingdom) L Lionel Adès L Luca Lanino (3Yale University, New Haven, United States) Y Yazan Madanat A Anne Sophie Kubasch (16University Hospital of Leipzig, Department of Hematology, Dresden, Germany) M Marie Sebert (1Hôpital Saint-Louis, Paris, France) R R. Coleman Lindsley (Dana-Farber Cancer Institute, Boston, Massachusetts, United States) K Katharina S. Götze C Carmelo Gurnari (1Translational Hematology & Oncology Research, Cleveland Clinic, Cleveland, OH) Y Yasushi Miyazaki (3Atomic Bomb Disease Institute, Nagasaki University, Department of Haematology, Nagasaki, Japan) A Aref Al-Kali (1Mayo Clinic, Division of Hematology, Department of Medicine, Rochester, United States) A Abdulraheem Yacoub (7University of Kansas Medical Center, Westwood, United States) B Bing Li I Ioannis Kotsianidis (29Department of Hematology, University Hospital of Alexandroupolis, Democritus University of Thrace, Alexandroupolis, Greece) M Maximilian Stahl A Amer Zeidan (18Yale School of Medicine - Yale Cancer Center, New Haven, United States)

Abstract

Abstract Introduction: Standardized reporting of clinical trials results for MDS is essential to improve clinical interpretation and cross-study comparison. However, reporting of patient characteristics, response criteria, and endpoints in publications is often inconsistent; there is no systemic analysis of MDS trial reporting available. We conducted a systematic review of published MDS trial manuscripts on behalf of the international consortium for MDS (icMDS) to assess variability in reporting practices. Methods We searched ClinicalTrials.gov to identify all clinical trials registered for adults (≥18 years) with MDS that reported results between 2015-2024. Clinical trials that included acute myeloid leukemia (AML) or MDS/myeloproliferative neoplasms (MPN) were included if they enrolled ≥5 MDS patients. We excluded trials without an MDS cohort; non-therapeutic trials; trials focused on transplant interventions; or those which enrolled solid malignancies or other hematologic malignancies (chronic myeloid leukemia or lymphoid diseases). Finally, trials were required to have a manuscript available on Larvol, PubMed, or Google Scholar. Trials were categorized by disease risk (lower-risk [LR] vs. higher-risk [HR]) and trial phase (early phase [EP] vs. late phase [LP]). Results We identified 502 MDS trials on ClinicalTrials.gov, of which 351 did not meet inclusion criteria and 79 lacked a manuscript. A total of 72 trials (32 EP, 40 LP) with 80 publications (34 EP, 46 LP) were analyzed. Frequently reported baseline characteristics included age (100% EP, 100% LP), disease risk (74% EP, 74% LP), Eastern Cooperative Oncology Group performance status (85% EP, 72% LP), prior treatments (71% EP, 67% LP), and RBC transfusion dependency (32% EP, 70% LP). Less frequently reported characteristics included blood counts (hemoglobin [Hb; 38% EP, 54% LP], platelet count [38% EP, 54% LP], neutrophil count [24% EP and LP]) and bone marrow blasts (29% EP, 43% LP). Although disease risk was widely reported, definitions varied: IPSS and IPSS-R were each reported in 54% of manuscripts, while IPSS-M appeared in only 3%. Cytogenetic risk was separately reported in 39% of manuscripts (38% EP, 39% LP), and mutational data in 45% (47% EP, 43% LP). Responses per IWG 2006 criteria were reported in 84% of manuscripts. The primary endpoint involved safety/tolerability in 85% of EP manuscripts, though definitions were variable; recommended phase 2 dose was the most common (26% of EP manuscripts). In LP trials, primary endpoints were risk-specific: transfusion independence (TI) in 77% of LR, overall response rate (ORR) in 28% of HR, and complete remission (CR) or overall survival (OS) in 22% of HR. In HR manuscripts, CR was reported in 100%, ORR in 73%, hematologic improvement (HI) in 48%, RBC-TI in 23%, and OS in 80%. However, seven different definitions were used for ORR: CR + marrow CR + partial remission + HI per IWG 2006 was most common (35%). Event-free survival was reported in 25%; progression-free survival and relapse-free survival in 13%; and leukemia-free survival in 5%. Early mortality rate was reported in 35% (18% EP, 56% LP) and transplant rate in 58% (50% EP, 67% LP). Only 47% of HR and 90% of LR manuscripts identified HI-eligible patients. In LR-MDS, RBC-TI was reported in 72% of manuscripts but used six definitions. The most common were RBC-TI ≥8 weeks at any time during treatment (24%), ≥8 weeks within 28 weeks of treatment (13%), ≥8 weeks with Hb increase ≥1.0 (4%), ≥12 weeks with Hb increase ≥1.5 (4%), and ≥16 weeks within 24 weeks of treatment (12%). The remainder did not report RBC-TI, did not define it, or used a custom definition not used in another trial. HI was reported in 80% of LR papers with most of those reporting HI using IWG 2006 criteria (90%). Conclusion Reporting of baseline characteristics, response criteria, and outcomes is inconsistent in MDS clinical trials, with wide variability in response definitions, including ORR and TI. This heterogeneity limits interpretability, hampers historical comparisons and may obscure efficacy signals. Our findings highlight the need for standardized reporting guidelines to ensure clarity and consistency in MDS trial publications. As a next phase of this effort, we will conduct a formal Delphi process among icMDS experts to establish consensus recommendations for minimal and optimal MDS clinical trial reporting in manuscripts by disease risk (LR/HR) and trial phase (EP/LP).

Article Details

Journal Blood
Volume / Issue Vol. 146, Issue Supplement 1
Published November 03, 2025
Pages 3852-3852
ISSN 0006-4971
Publisher Elsevier BV

Journal Info

Blood

Elsevier BV

ISSN: 0006-4971 Health Sciences

Authors (71)

T

Ted Getz

1Yale University and Yale Comprehensive Cancer Center, Department of Internal Medicine, Section of Medical Oncology and Hematology, New Haven, United States

K

Kelly Pugh

2The Ohio State University Comprehensive Cancer Center/James Cancer Hospital, The Ohio State University, Division of Hematology, Columbus, United States

A

Andrew Brunner

3Dana-Farber Cancer Institute, Boston, United States

J

Jan Philipp Bewersdorf

A

Amy DeZern

1Johns Hopkins University School of Medicine, Oncology, Baltimore, United States

T

Tariq Kewan

1Cleveland Clinic, Department of Translational Hematology and Oncology Research, Cleveland, United States

U

Uma Borate

2Ohio State University Comprehensive Cancer Center, Columbus, United States

U

Uwe Platzbecker

M

Mikkael Sekeres

13Sylvester Cancer Center, University of Miami Health System, Miami, United States

A

Andrew Wei

3Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia

S

Shahram Kordasti

R

Rena Buckstein

G

Gail Roboz

3Weill Cornell Medicine and The New York Presbyterian Hospital, New York, United States

M

Michael Savona

7Vanderbilt-Ingram Cancer Center, Vanderbilt University School of Medicine, Nashville, United States

S

Sanam Loghavi

R

Robert Hasserjian

13Massachusetts General Hospital, Department of Pathology, Boston, United States

P

Pierre Fenaux

D

David Sallman

Moffitt Cancer Cancer and Research Institute, Tampa, Florida, United States

C

Christopher Hourigan

13Fralin biomedical research institute, Virgina Tech University, Roanoke, United States

M

Matteo Della Porta

1IRCCS Humanitas Research Hospital, AI Center, Rozzano, Italy

S

Stephen Nimer

6Sylvester Comprehensive Cancer Center, University of Miami Miller School of Medicine, Division of Hematology, Miami, United States

R

Richard Little

27National Cancer Institute, National Institutes of Health, Bethesda, United States

V

Valeria Santini

7DMSC University of Florence, AOUC, MDS Unit, Hematology, Florence, Italy

F

Fabio Efficace

1Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy

J

Justin Taylor

O

Olatoyosi Odenike

University of Chicago Medicine and Comprehensive Cancer Center, Chicago

T

Tae Kon Kim

1Vanderbilt University Medical Center, Division of Hematology/Oncology, Department of Medicine, Nashville, United States

S

Stephanie Halene

Department of Pathology, Yale School of Medicine

R

Rami Komrokji

Moffitt Cancer Cancer and Research Institute, Tampa, Florida, United States

E

Elizabeth Griffiths

8Roswell Park Comprehensive Cancer Center, Buffalo, United States

P

Peter Greenberg

1Stanford University School of Medicine, Medicine, Stanford, United States

M

Mina Xu

1Yale School of Medicine, Hematology/Oncology, New Haven, United States

Z

Zhuoer Xie

Moffitt Cancer Center, Tampa, Florida, United States

R

Rafael Bejar

G

Guillermo Sanz

26Hospital Universitario y Politécnico La Fe, Hematology Department, Valencia, Spain

M

Mrinal Patnaik

5Mayo Clinic, Rochester, United States

M

Maria E. Figueroa

6Sylvester Comprehensive Cancer Center, University of Miami Miller School of Medicine, Division of Hematology, Miami, United States

H

Hetty Carraway

1Cleveland Clinic, Internal Medicine, Cleveland, United States

O

Omar Abdel-Wahab

Molecular Pharmacology Program, Sloan Kettering Institute

D

Daniel Starczynowski

3Cincinnati Children's Hospital Medical Center, Division of Experimental Hematology, Cincinnati, United States

E

Eric Padron

Moffitt Cancer Cancer and Research Institute, Tampa, Florida, United States

J

Jacqueline Boultwood

S

Steven Gore

N

Naval Daver

1The University of Texas MD Anderson Cancer Center, Houston, TX

J

Jane Churpek

2University of Wisconsin-Madison, Madison, United States

R

Ravi Majeti

1Department of Medicine, Division of Hematology, Stanford University School of Medicine, Stanford, United States

J

John Bennett

Department of Pathology

A

Alan List

7Halia Therapeutics, Inc., Lehi, Utah, United States

A

Adrian Mosquera Orgueira

36Instituto de Investigacións Sanitarias de Santiago, Complexo Hospitalario Universitario de Santiago de Compostela, Department of Hematology, Santiago de Compostela, Spain

K

Klaus Metzeler

4Department of Hematology, Cell Therapy, Hemostaseology and Infectious Diseases, University of Leipzig, Leipzig, Germany

F

Francesc Sole

8Institut de Recerca Contra la Leucèmia Josep Carreras, Barcelona, Spain

L

Lisa Pleyer

A

Arjan van de Loosdrecht

12Amsterdam University, Amsterdam, Netherlands

T

Thomas Cluzeau

15Service d’Hématologie, Centre Hospitalier Universitaire de Nice, Nice, France

D

David Steensma

42Ajax Therapeutics, Cambridge, United States

G

Ghulam Mufti

43King's College, London, United Kingdom

L

Lionel Adès

L

Luca Lanino

3Yale University, New Haven, United States

Y

Yazan Madanat

A

Anne Sophie Kubasch

16University Hospital of Leipzig, Department of Hematology, Dresden, Germany

M

Marie Sebert

1Hôpital Saint-Louis, Paris, France

R

R. Coleman Lindsley

Dana-Farber Cancer Institute, Boston, Massachusetts, United States

K

Katharina S. Götze

C

Carmelo Gurnari

1Translational Hematology & Oncology Research, Cleveland Clinic, Cleveland, OH

Y

Yasushi Miyazaki

3Atomic Bomb Disease Institute, Nagasaki University, Department of Haematology, Nagasaki, Japan

A

Aref Al-Kali

1Mayo Clinic, Division of Hematology, Department of Medicine, Rochester, United States

A

Abdulraheem Yacoub

7University of Kansas Medical Center, Westwood, United States

B

Bing Li

I

Ioannis Kotsianidis

29Department of Hematology, University Hospital of Alexandroupolis, Democritus University of Thrace, Alexandroupolis, Greece

M

Maximilian Stahl

A

Amer Zeidan

18Yale School of Medicine - Yale Cancer Center, New Haven, United States