Working
Groups
This Action will bring together Chronic GvHD (cGvHD) researchers across Europe for the first time, creating a network of cross-disciplinary experts in the field.
Working Group 3
Socioeconomics/Quality of life
Lead
Dr Hélène Schoemans
Helene has been employed at the UZ Leuven (Belgium) since 2009 as a bone marrow transplantation physician. Her particular interests are Graft versus host disease, Survivorship, Patient Reported Outcomes, eHealth, Chronic care models and Quality of life. She is Chair of the ‘Late Effects Subcommittee’ of the Transplant Complications Working Party of the EBMT (European Society for Bone & Marrow Transplantation).
Dr Hélène Schoemans
Country
Belgium
helene.schoemans@uzleuven.be
Vice Lead
Daniel Wolff
Country
Germany
daniel.wolff@ukr.de
Overview
CGvHD is a long term complex disease which has several co-morbidities and as such impacts on the quality of life of patients. By studying the societal impact of the disease via documented patient-reported outcome (PRO) assessments, including reduced working days due to hospital stays, EUROGRAFT will allow an improved assessment of the burden on society of cGvHD at both the individual and European level.
Objective
Estimate the burden of cGvHD to transplant communities and to societal impact. Assessment of the quality of treatment compared to financial input in different European countries by close interaction of clinicians and experts in economics.
Task 1
To survey current practice pattern in cGVHD PRO assessment across European centers through a joint EBMT-COST survey.
Task 2
To review the current literature on PRO assessment in cGVHD and create an online toolbox of standardized instruments to evaluate PRO in cGVHD patients.
Task 3
To make patients’ voice heard and identify current challenges in cGVHD from the patients’ perspective.
Task 4
To create a framework to understand the societal cost of cGVHD in collaboration with health economy experts.
Get involved with this Working Group
If you wish to join this Working Group, please email admin.cost17138@ncl.ac.uk or one of the leads.
Other working groups
Biomarkers
This Working Group will assess the type and amount of biomarker information which is currently available in the literature and assess those which are worthy of further validation and study.
NIH Consensus
The NIH consensus criteria needs to be implemented uniformly if diagnosis and treatment of
cGVHD is to be optimized. The aim of this Working Group will be to aid in both the understanding and
implementation of the NIH Consensus via Training Schools and workshops.
Immunotherapy
Patients with cGvHD (30-50%) can become refractory to standard therapy, new treatment options and the assessment of current novel therapies are urgently needed to improve the long term outcome and quality of life. In this Working Group the Action will bring together experts in cGVHD and clinical trial development, especially in the realm of cellular therapies with the aim of developing concepts for new approaches including personalized approaches to therapy.
See Also
Find out more about the Action by exploring the site links on the right hand side.
