Epidemiology and health services research: Ongoing initiatives

This page contains five sections:

  • Task force on requirements for observational treatment registers
  • EULAR perspectives in patient-reported outcomes
  • Symptom measurement in persons at risk of rheumatoid arthritis
  • Recommendations for the standardised content and structure of core data to facilitate patient care and research in rheumatoid arthritis
  • EULAR points to consider for worksorce requirement studies in rheumatology

Scroll down to gain further information on each section.

EULAR standardised operating procedures for implementing recommendations

Convenor: Estibaliz Loza

EULAR Task Force on Gender Equity in Academic Rheumatology (EULAR GEAR)

Formerly called: EULAR Task Force to establish the evidence base and need for a EULAR Women’s Network for Academics

Convenor: Laura Coates

EULAR Points to Consider when analysing and reporting comparative effectiveness research with observational data in rheumatology

Convenor: Delphine Courvoisier

EULAR Points to Consider when designing, analysing and reporting studies with work participation as outcome among patients with inflammatory arthritis Strategy budget

Convenor: Annelies Boonen

Development of recommendations for a core data set for pregnancy registers in rheumatology, no budget

Convenor: Anja Strangfeld

EULAR Points to Consider: "Development of lifestyle behaviour recommendations to prevent progression of Rheumatic and Musculoskeletal Diseases"

Convenor: Suzanne Verstappen

Task force on requirements for observational treatment registers

Convenor: Johan Askling, Will Dixon

This 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.
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The second deliverable - an implementaton 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.
Following the workshops participants wish a EULAR Study Group on Longitudinal Observational Registers and Drug Studies was established.
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A checklist should serve as an educative tool to assist authors in writing reports of longitudinal observational drug studies in rheumatology, editors and peer reviewers in reviewing manuscripts for publication, and readers in critically appraising published articles. The "EULAR points to consider when establishing, analysing and reporting safety data of biologics registers in rheumatology" article [1]  and the STROBE statement [2]  provide elucidation and context to the checklist items.
Download checklist
Regular meetings will provide an opportunity for networking and development of international collaborative studies. The aim is to explore issues throughout the lifespan of studies, from first thoughts around establishing a register, practicalities such as funding, bio-banking and informatics, through methods of data collection, opportunities for harmonizing practice, analysis methodology, to the interpretation and dissemination of results.
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EULAR perspectives in patient-reported outcomes

Convenor: Angela Zink

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 covered 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.
The EULAR Outcomes Measures Library (OML) is part of this initiative. The database includes a detailed description of each instrument, including:

  • The instrument itself
  • Description of the population/s or settings where it has been validated
  • Recommendations and rules for use  (data collection and scoring method)
  • Guideline for interpretation of the results in clinical practice or in research.
  • References and validated translated versions in the EU languages, with download if possible or link to an access page.
  • Information on how validation aspects were tested.

OML aims to be a comprehensive database of validated patient-reported instruments (indices, questionnaires, scales, or others) used in rheumatology.
Go to OML
 

Related information

News for epidemiologists from the
European Medicines Agency (EMEA)

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.
Read more

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.