EASL Clinical Practice Guidelines

Research agenda

Diagnosis and treatment of AIH have seen enormous progress over the past 50 years, and the majority of affected patients can be treated very successfully with a normal or near normal life expectancy and good quality of life. Nonetheless, many patients still experience considerable morbidity and mortality, primarily due to:

  • delayed or missed diagnosis
  • drug intolerance
  • drug side effects
  • insufficient treatment response
  • poor management and poor delivery of care
  • poor compliance

Discussion of this CPG has shown the many numbers of open or poorly answered question and thus is the basis of the clinical research agenda. Table 8 gives a list of points and questions that should be addressed in future research. A key problem in clinical research in AIH is the rarity of the disease. Therefore, establishing major treatment centres with specialised expertise and coordinated cooperation of such centres will be a key factor in improving clinical research in AIH. At the same time, methods of delivery of care, different approaches, questions of cost-effectiveness such as factors of psychosocial impairment and support clearly need our attention in the future. Patient involvement in setting the research agenda may also be needed to be sure to address those questions relevant to those affected.

Table 8
Research agenda.

In addition to clinical research, basic research focussing on the aetiology of AIH and aiming to understand the underlying pathophysiology will be the key to improved treatment of the disease. At present, the majority of patients need drug treatment every day of their life, leading to both physical as well as psychosocial impairment in the quality of life in many of them. Patients want cure, not suppression of disease activity, and for most patients, if not all, we are at present unable to provide a cure for their disease. In order to reach curative treatment, we have to closely collaborate with basic scientists and follow development in immunology and related disciplines.