Standing Committee on Epidemiology and Health Services Research
Current Activities
The standing committee has a number of major activities under various stages of progress.
Ongoing Activities
European Musculoskeletal Conditions Surveillance and Information Network (EUMuscNet)
The Standing Committee on Epidemiology closely collaborates with the project "European Musculoskeletal Conditions Surveillance and Information Network" (PI: Tony Woolf, Truro, UK) funded by the European Union and EULAR. The project will also link with an international World Bank initiative updating data used in the Global Burden of Disease project.
EUMuscNet started in March 2010. The aims are to develop a health surveillance and information system and network which will help to raise the quality of care and harmonise standards of care of musculoskeletal conditions across EU Member States. Specific work packages aim at disseminating information and identifying and helping overcome barriers to effective prevention and management of musculoskeletal conditions.
Task Force on Requirements for Observational Treatment Registers
Under the joint leadership of Johan Askling (Stockholm) and Will Dixon (Manchester) this Task Force was established in 2008. The Task force encompassed eleven scientists from independent European rheumatology drug registers. The first deliverable was a strategy paper on points to consider when establishing or analysing data from a biologics register, which was published in September 2010 (Dixon et al., EULAR points to consider when establishing, analysing and reporting safety data of biologics registers in rheumatology, Ann rheum Dis. 2010 69:1596-602).
The second milestone of the task force was an implementation workshop held in Zurich in January 2011. Topics included practicalities and logistics regarding registers, sharing of experiences, specific issues pertaining to epidemiological analyses of register data, considerations when reporting results, and possibilities of concerted data analyses. The workshop aimed at communicating the recommendations to a wider community and supporting persons all over Europe in planning and implementing biologics registers. It also gave hints on the challenges connected to those data. No formal experience of registers or of epidemiological data analysis was required; both younger research fellows as well as clinicians with an interest in registers were invited. Around 60 delegates expressed interest in participating. One person from each country could eventually be invited. In total, there were 29 attendees (27 delegates and the faculty of 12).
Many workshop participants expressed their wish that discussion on methodological issues and collaboration should be continued on a regular basis. Collaboration could be facilitated by the EULAR Task Force within the Standing Committee on Epidemiology. It is therefore planned to implement a study group on biologics registers within the SC. In addition, EULAR is taking a more active role in bringing the European registers together.
EULAR perspectives in patient-reported outcomes
Based on expert opinions gathered at a EULAR workshop in November 2009, a proactive call on research proposals in the field of patient-reported outcomes (PROs) was launched in November 2010. It covers the areas of cross cultural validation of existing instruments as well as the development of new PROs or personal life impact measures. 28 letters of intent for research projects were sent to EULAR. They were reviewed by three members of the Executive Committee and one patient representative. 21 proposals fulfilled the criteria of the call, and the applicants were encouraged to submit a full proposal. Seventeen proposals received external peer review from experts in the field, and six projects were finally approved for funding in September 2011.
EULAR task force on "Long-term extension studies"
A task force was established to clarify and make recommendations on how to design, conduct or report long-term extension (LTE) studies. Under the leadership of convenors Maja Buch (UK) and Maarten Boers (NE), the taskforce met in Zurich in March 2011 to develop points to consider when analyzing and reporting results from LTE. During the meeting, several discussion groups developed and analysed items of a Delphi questionnaire, and a second Delphi round is under way.
RELATED INFORMATION
News for epidemiologists from the European Medicines Agency (EMA)
The European Network fo Centres for Pharmacoepidemiology and Pharmacovigilance (ENCePP) has developed the Guide on Methodological Standards in Pharmacoepidemiology. It reviews existing methodological guidance for research in pharmacoepidemiology and pharmacovigilance, and contains useful links.
Additionally, ENCePP has revised the Clinical Trials Directive 2001/20/EC, especially with regard to non-interventional trials and type-A trial (low risk). The revised directive should ease the implementation of observational studies in Europe.