Skip to main content
Home
  • Clinical Outcome Assessments
    Clinical Outcome Assessments

    What are Clinical Outcome Assessments (COAs)? What do they measure?

    Learn more about COAs
    Collaborating with questionnaire authors.
    The most trusted distributor of COAs

    700+ exclusive COA distributions on behalf of their copyright owners

    Author discussing assessment development.
    PROQOLID™: the largest COA database

    7,000+ COAs described in details and accessible in this unique database

  • Services
    Services

    Mapi Research Trust provides turnkey solutions for your Clinical Outcome Assessments (COAs) strategies - including COA databases, targeted literature reviews, licensing.

    Read More
    COA Databases Patient-Centered Endpoint Intelligence COA Licensing Translation and Linguistic Validation eCOA Licensing COA Repository
    Team reviewing questionnaire content.
    About ePROVIDE™

    Online access to all our services and COA databases

    Working on validation studies.
    What are eBooklets?

    Find out more about this step-by-step guidance for valid digitization of COAs

  • Author Collaboration
    Author Collaboration

    Our team is dedicated to assisting authors in the daily management of their questionnaires and all derivatives, including translations and electronic versions

    Read More
    COA distribution COA copyright and protection Promotion of COAs and developers Testimonials
    Reviewing translated assessments.
    Catalog of COAs distributed by Mapi Research Trust

    800+ exclusive distributions of COAs, accessible in ePROVIDE

  • Resources
    Resources

    ACCESS all our resources on COAs and eCOA: webinars, publications, blogs. SUBSCRIBE to receive email updates.

    Read More
    Blog Publications Useful links Webinar recordings Whitepapers
    Whitepaper-Digitizing-COAs.jpg
    New whitepaper

    Digitizing COAs: A streamlined approach to approval

    Developing new PRO instruments.
    New whitepaper

    COAs and copyright: How to mitigate risks of infringement and misuse in clinical research and practice

  • News & Events
    News & Events

    Stay informed with our latest news and check all our upcoming events. SUBSCRIBE to get email updates.

    Read More
    Scientific meeting about COAs.
    News
    Meeting with instrument developers.
    Conferences
    Discussion about PRO measures.
    Webinars
  • About us
    About us

    Mapi Research Trust is a non-profit organization dedicated to improving patients’ quality of life by facilitating access to Clinical Outcome Assessments(COAs).

    Read More
    Collaborative research session.
    Team

    A global team of multi-disciplinary experts

    Team analyzing PRO data.
    Experience

    Collecting & Processing Patient Centered Outcomes information for more than two decades

  • Contact
  1. Home
  2. News & Events
  3. News
  4. Publication in the European Journal of Haematology

Publication in the European Journal of Haematology

Co-authored by Mapi Research Trust’s Sandra Desruol-Allardin and Isabelle Savre.

Patient‐reported outcome measures in studies of myelodysplastic syndromes and acute myeloid leukemia: Literature review and landscape analysis

Reinhard Stauder, Jérémy Lambert, Sandra Desruol‐Allardin, Isabelle Savre, Lona Gaugler, Igor Stojkov, Uwe Siebert, Hélène Chevrou‐Séverac 

Abstract 

Objectives

This study aims to describe the use of patient‐reported outcome measures (PROMs) in myelodysplastic syndromes (MDS) and acute myeloid leukemia (AML) studies and the PROMs landscape. 

Methods

A comprehensive literature review was performed in Medline/Embase (since 2000) and ClinicalTrials.gov (since 2013) to identify PROMs used in MDS and AML clinical studies. Additionally, PROMs included in approved drug labels since 2000 were reviewed. 

Results

Overall, 112 different PROMs were used in 168 published MDS studies and 152 PROMs were used in 172 AML studies. From ClinicalTrials.gov, 16 different PROMs were used in 22 ongoing registered studies in MDS, and 24 were reported in 41 AML studies. The most frequently used PROMs were cancer‐specific (eg, EORTC QLQ‐C30, FACT‐An) or generic (SF‐36, EQ‐5D) instruments, whereas MDS‐ and AML‐specific instruments (eg, QUALMS and QOL‐E in MDS; FACT‐Leu and EORTC QLQ‐Leu in AML) were used in a minority of studies. Two EMA‐approved drugs for MDS included PROMs in their label. EORTC QLQ‐C30 is by far the most frequently used cancer‐specific PROM in both MDS and AML studies.

Conclusions

This research indicated an underuse of AML/MDS‐specific PROMs for these two indications in clinical studies and labeling claims. However, AML/MDS‐specific instruments in development might be considered in future studies.

 

To read the full publication please visit https://doi.org/10.1111/ejh.13389

 

Stauder, R, Lambert, J, Desruol‐Allardin, S, et al. Patient‐reported outcome measures in studies of myelodysplastic syndromes and acute myeloid leukemia: Literature review and landscape analysis. Eur J Haematol. 2020; 104: 476– 487. https://doi.org/10.1111/ejh.13389

 

Creative license link http://creativecommons.org/licenses/by/4.0/

In this section
In this section
  • News
  • Events
    • Conferences
    • Webinars
Site Branding
    ICON plc
  • Contact
  • About Us
For Clients
  • Services
  • Resources
  • ePROVIDE™
News & Events
  • News
  • Conferences
  • Webinars
Socials
  • Linkedin

Legal Footer

  • © 2025 Mapi Research Trust
  • Disclaimer
  • Privacy
  • Site Cookies
How can we help?
  • All
Popular search terms:
  • COVID-19
  • Site & Patient Recruitment
  • Oncology
  • Medical Device
  • Real World Evidence
  • Decentralised & hybrid clinical trials
  • Digital Disruption