Highlights

Impactful activities

Guideline development project

The most relevant and impactful activities of the SWG include those related to the guideline development project.

There were regular meetings with the Guidelines Expert Panel Committee.

SWG business meetings were held to discuss the progress in the development of the guidelines for the use and reporting of patient-reported outcomes in adult clinical trials. These meetings took place in February, July, and November 2024.

Regular meetings were held with Cochrane Haematology and the University of Cologne specialists involved in the systematic review process.

Systematic reviews for these guidelines are in progress.

Advancements

SWG-organized session at EHA2024

Presenters and topics

  • ‘Designing a study with PRO measures – Guidelines for lymphoma trials’—Edward Laane (Estonia)
  • ‘Is it time for implementation of PROs in routine haematological practice? Benefits for Patients’—Esther Oliva (Italy)
  • ‘Is it time for implementation of PROs in routine haematological practice? Benefits for Family members/Caregivers’—Sam Salek (United Kingdom)
  • ‘Why, when and how to involve patient support groups in the design of clinical studies’—Samantha Nier (Switzerland)

Presentations at external conferences

Japanese Society of Hematology (JSH) Annual Meeting

Edward Laane of Tartu University and Kuressaare Hospital, Estonia, presented at JSH2024.

The title of his presentation was ‘EHA guidelines for the use and reporting of patient-reported outcomes in multiple myeloma clinical trials.’

The presentation took place on Saturday, October 12, 2024, at JSH2024, in Kyoto, Japan.

UK Myeloma Society Autumn Day

Sam Salek of the University of Hertfordshire, UK, presented duting the UK Myeloma Society Autumn Day.

The title of his presentation was ‘Quality of Life Assessment in Trials and Routine Care.’

The presentation took place on November 24, 2024, in London, UK.

51st Annual Meeting of the European Society for Blood and Marrow Transplantation (EBMT)

Esther N Oliva of London Northwest University Healthcare NHS Trust, UK, presented at EBMT’s 51st annual meeting.

The title of her presentation was ‘Patient involvement on designing PRO surveys in Patient, Family, and Donor Patient Voice Matters: PROs to Improve the Patient Journey.’

The presentation took place on March 30, 2025, in Florence, Italy.

2025 priorities

The SWG’s top three follow-up activities for the next year are the:

  • Finalization of the guidelines for PRO assessment in lymphoproliferative neoplasms, myeloproliferative neoplasms, leukemias and myelodysplastic neoplasms
  • Preparation of the SWG’s session at EHA2026
  • Publication of the systematic review articles in non-Hodgkin lymphomas, leukemias, and MDS
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