High-burden under-researched medical conditions mapped, identification provides tools for additional EU research
A number of medical conditions are insufficiently recognized, diagnosed and treated, even though they represent a major burden for patients and society. This is due to a lack of knowledge and scientific research. The EUHealthSupport Consortium conducted exploratory research for the European Commission into these so-called ‘high-burden under-researched medical conditions’. This resulted in a definition of these types of conditions and in the identification of 12 groups of conditions falling under this heading.
The European Commission allocates funding for research to increase knowledge and expertise of specific medical conditions, and to promote their treatment. This study provides a first impression of disease areas that have been relatively little researched and where more support appears to be needed. The findings of this study provide guidance in designing programs for diseases and conditions where research is most needed.
What are high-burden under-researched medical conditions? A definition
We defined high-burden under-researched medical conditions as ‘diseases or conditions that receive insufficient research funding relative to the expected level of funding based on their disease burden’.
In this working definition, derived from literature research and stakeholder consultation, the expected level of funding is based on whether there is a balance between the contribution of the burden on patients that the disease or condition imposes relative to the total burden on the European population; and the share of the total budget a specific disease or condition receives relative to the total funding for medical research.
Which medical conditions are high-burden and under-researched? Identifying 12 groups
To identify conditions with a high disease burden that may be under-researched, we used four complementary perspectives (more on this at 'About the research’). This resulted in the identification of 12 groups of conditions:
Conditions with a high burden of disease that may be insufficiently researched
- Mental disorders
- Disorders of the blood and organ system
- Musculoskeletal disorders
- Headache disorders
- Fatigue / weakness
- Sleep-wake disorders
- Skin and subcutaneous disorders
- Gynaecological disorders
- Conditions related to sexual health
- Developmental anomalies
- Immune-related diseases
- Other conditions (specified in the publication)
The findings of this study – the formulated definition and the identification of 12 distinct disease groups – provide guidance to EU policy makers in designing programs for diseases and conditions where research is most needed, in order to improve health and healthcare in the EU.
About the research
In this exploratory study for the European Commission, the EUHealthSupport Consortium defined and compiled a list of potentially high-burden under-researched medical conditions in the EU. This did not include rare conditions. To compile the list, we used four complementary perspectives to identify possible high-burden under-researched medical conditions:
- In the first perspective, we matched disease groups with EU funding allocated to research of a group of medical conditions.
- In the second perspective, we related the amount of funding to the disease burden of medical conditions.
- In the third perspective, we took a brief literature search in PubMed as a starting point to identify the complaints with which patients visit their GP, in order to identify ‘high burden’ conditions.
- In the fourth perspective, we asked stakeholders to indicate which medical conditions with a high burden of disease are relatively little researched.