News from the Eular Committee on Epidemiology and Health Services Research (May 13th, 2015)

By Deborah Symmons.

I hope that you are all well and looking forward to the EULAR Annual Congress in Rome in June. This newsletter includes some updates from the EULAR Executive, will flag up some important sessions at the EULAR Congress and seeks your input to the SCEHSR annual meeting.


The website ( has been updated and is much improved. If you have not visited, already I encourage you to do so. You will find details about SCEHSR and its study groups under ‘How we work’. On the website you will notice that there are currently two joint EULAR-ACR calls. One is for the development of classification criteria or revising existing criteria sets; the other is for the development of response criteria for use in clinical trials and possibly clinical practice (Deadline 31st May 2015).
The new EULAR on-line journal: RMD Open ( has now been launched and the first articles published. The editor is Bernard Combe.
Iain McInnes is leading EULAR work on developing a ‘Roadmap for research’ to be adopted transnationally. This will identify areas of priority to patients, likely to be solvable within a 5-10 year time span, and which have relevance across diseases.

Details of the SCEHSR annual business meeting in Rome

Axel Finkch will take over as the Chair of our committee during the EULAR Congress. He will chair the annual business meeting which will take place on Thursday June 11th in Room Quirinale. It will start at 8.30 am but the room is booked from 8.15 am. The meeting will end by 10.15 am. Light refreshments should be available. If you are a national representative please make every effort to attend. If you will not be at the Rome meeting, you are welcome to appoint a deputy. Please let us know in advance of any substitutes. If you are not a national representative but would still like to attend please also let us know. It will probably be possible but we were only allowed to book a modest sized room!
We will be circulating the agenda nearer the date. Please let me or Axel (axel.finckh at know, by 22nd May, if there are any items that you would like to be included in the agenda.

SCEHSR activities since September 2014

On 16th October 2014 representatives of the SCEHSR attended a conference organized by the EULAR Public Affairs Office at the EU Parliament in Brussels. It was entitled ‘Analysing how to reduce the access barriers to healthcare for people with chronic disease in Europe – challenges, good practice and policy: options for people with RMDs’.

The EULAR executive recently agreed to fund an application put forward via our committee entitled ‘Recommendations for the standardized content and structure of core data to facilitate patient care and research in rheumatoid arthritis’ . The project is being led by Johan Askling and Will Dixon in the EULAR RODS study group on registers and observational drug studies.

The 4th EULAR Course on Epidemiology will be held in Berlin on 3-4th July 2015. Further details are on the EULAR website ( Plans are advancing well for a EULAR Course on Health Economics to be held in Nancy, France in spring 2016. This will be aimed at both rheumatologists and other healthcare professionals.

A second EULAR RODS meeting has been arranged for 7-8th December to be held in Prague. Details are not on the EULAR website yet. More details will be available in Rome.

Highlights to look forward to in Rome

Plans for the Rome Congress (10th-13th June 2015) are now complete ( . Ingemar Petersson is the SCHESR representative on the scientific committee which organizes the Congress. The Chair of SCEHSR also sits on the committee. As in previous years, epidemiology and health services research received a large number of abstracts – the third largest category.
The open meeting of SCEHSR will be on Friday 12th June 15:45-17:15 in Room H. It will feature final reports from the EULAR PRO projects and how these can feed into the EULAR Outcome Measure Toolkit. Sadly this does clash with other sessions – but this was unavoidable.
There will be an epidemiology and HSR abstract session on Thursday 11th June 10:30 (Hall 2) and an epidemiology and HSR poster tour on Friday 12th June. Outcome Science sessions (all in Hall 1) which may be of interest to you include:

  • Optimising the use of electronic information and technology in clinic and research (Wed 10th June 15:00)
  • Searching for the evidence to support clinical practice (Wed 10th June 17:00)
  • Functioning measures of function: PROMs and CROMs (Thurs 11th June 13:45)
  • Work productivity as an outcome measure (Thurs 11th June 15:45)
  • Predicting the development of RA (Friday 12th June 13:45)
  • Cost effectiveness of biologics in RA (Friday 12th June 15:45)
  • New challenges in clinical trials (Sat 13th June 08:30)
  • Quality indicators – a way to measure the quality of care (Sat 13th June 12:00)

Of course there are many other interesting sessions in the other streams of work.
Planning for the 2016 meeting (to be held in London) will begin on the Monday before the Rome meeting. If you have any suggestions for sessions (ideally which fit within the Outcomes Sciences theme) they would be most welcome. Please send them to Ingemar Petersson or Axel Finckh by 5th June 2015. Your suggestions should include a session title and up to three suggested speakers – with titles for their talks.


Nos vamos de la Casa de las Flores

Han sido dos años emocionantes e íntimos. Nuestro paso por la preciosa Casa de las Flores, la casa que Alberti recomendó a Neruda cuando este pasó por Madrid. La casa que nos acogió y alegró las mañanas y que nos protegió del madrileño ruido. La casa donde ahora se quedan nuestros amigos. Nos vamos a otra oficina, a compartir el espacio no ya con psicólogos y abogados, sino con otros reumatólogos, fisioterapéutas y lo que se preste, al proyecto ilusionante de Pepe de la Mata en el Instituto de Salud Osteoarticular.

No estaremos lejos, en la zona de Guzmán el Bueno. Y siempre nos quedará el recuerdo de las risas y mesas compartidas. Gracias, Javier, por abrirnos la puerta de tu casa y confiar el lugar donde gestaste tu proyecto de arquitectura, ahora un fantasma, a esta troup de locas.

News from Eular-Epidemiology (by Deborah Symmons, Chair of Epidemiology and Health Services Research)


Feed-back from the Eular executive

The EULAR Research Foundation has been renamed FOREUM (Foundation for Research in Rheumatology). In future, all applications for primary research will be considered by FOREUM. For the foreseeable future FOREUM will only consider applications within the specified area for that year. The topics for 2014-5 are expected to be ankylosing spondylitis and SLE. The call has not yet been announced but is expected soon via the EULAR website. From now on, EULAR itself will only consider applications for EULAR branded outputs such as guidelines, points to consider and recommendations. If you are considering making an application to either of these funding sources, I would strongly recommend that you visit the EULAR website for guidance and contact me so that we can make sure that the application matches the expectations of those who will consider it for funding.

The EULAR executive recently agreed to fund an application put forward via our committee to develop a questionnaire to be used in studies of ‘pre-RA’ that is to identify individuals with symptoms likely to develop into RA. The project is being led by Dirkjan van Schaardenburg and colleagues in the EULAR study group on risk factors for RA.

News from the Eular Congress

Axel Finkch is now the Chair Elect of our standing committee and Ingemar Petersson is our representative on the scientific committee which is currently planning the 2015 EULAR Congress.
Many thanks to those of you who attended the annual meeting of the standing committee during the EULAR Congress in Paris. A copy of the minutes is attached (available from InMusc) which were kindly taken by Axel and provide an excellent summary of the current and future activities of our committee.
The open meeting at the Paris Congress featured presentations from our two study groups (EULAR RODS and the EULAR Study Group on Public Health). It was called ‘Improving patient care and safety through data acquisition and analysis’. EULAR RODS (Registers and Observational Drug Studies) held a very successful meeting in Prague in November 2013. A further meeting is planned for December 2015. The Study Group on Public Health is continuing the work of EUMuscNET in raising the profile of RMDs in Europe.
Plans for the Rome Congress (10th-13th June 2015) are progressing well. We have already had two meetings to discuss sessions for the ‘Outcomes science’ stream and we have also had input into some of the clinical sessions. The website will open for abstract submission on 1st October 2014 and close on 31st January 2015. Further details are available on the much improved website: Apparently 50% of abstracts are submitted in the final 24 hours! The ‘Epidemiology and Health Services Research’ topic generally has the largest number of abstracts – well over 300. However many of the abstracts submitted to this topic would fit better with the disease topic to which they apply and are not really epidemiology or health services research! Please encourage your colleagues to consider carefully which topic they select in order that their abstracts be considered by the most appropriate reviewers.

EULAR and the European Parliament

EULAR has an office in Brussels which is dedicated to raising the profile of RMDs throughout Europe and especially within the EU parliament. Prior to the 2013 elections, the EULAR Brussels office contacted many candidates to provide them with some basic information about RMDs and to seek their support. Around 40 of those who expressed an interest have been elected. EULAR are working to expand that group and to provide them with regular and digestible updates. I have been invited to attend a conference for MEPs called: ’Analysing how to reduce barriers to health care for people with chronic diseases in Europe’ which will be held in Brussels on 16th October.
EULAR is starting to work on developing a ‘Roadmap for research’ to be adopted transnationally. This will identify areas of priority to patients, likely to be solvable within a 5-10 year time span, and which have relevance across diseases.

News from the EMA

The EMA is considering the cardiovascular safety of over-the-counter ibuprofen. Please see attached press release (Available at InMusc)

¿Se pueden recomendar medicamentos fuera de indicación en documentos consenso?

¿Se pueden recomendar medicamentos fuera de indicación en documentos consenso?

Curso de registros y bases de datos


Las bases de datos clínicas y los registros proporcionan datos recogidos de forma sistemática que pueden, convenientemente analizados, aportar información sobre sobre la incidencia, prevalencia, mortalidad, curso natural y la supervivencia de las enfermedades y de subgrupos de pacientes. Además, pueden proporcionar información muy valiosa sobre seguridad y eficacia de los medicamentos en condiciones de la vida real, o ser la base para ensayos clínicos pragmáticos y otros tipos de estudios. Finalmente, los registros pueden ser utilizados como medida de la calidad de la asistencia.

En las últimas décadas, el tipo y el alcance de la información captada por los diferentes registros se han ampliado en gran medida y muchos registros se han puesto en marcha, algunos incluso imbricados en la práctica clínica. Sin embargo, a medida que se establecen más registros, el numero de malentendidos y de usos inadecuados, incluidos análisis e interpretaciones incorrectas, aumenta casi de forma exponencial.


Este curso introducirá, de una manera práctica, cómo diseñar un registro, solventar problemas logísticos, y las técnicas estadísticas más adecuadas para el análisis de datos de tipo longitudinal. Vamos a mostrar cómo pueden ser fácilmente calculadas medidas de morbilidad, utilizando el programa estadístico Stata, y como explicar, a través de modelos de regresión de Poisson, de medidas repetidas, técnicas de análisis de supervivencia, y otras las relaciones entre factores y desenlaces. El conocimiento de estas técnicas por médicos, investigadores, científicos y responsables políticos permitirá obtener resultados más eficientes y una interpretación más correcta de los datos obtenidos a partir de registros y bases de datos.


  • Aurelio Tobías, MSc, PhD, CStat es Profesor Titular en el Instituto de Diagnóstico Ambiental y Estudios del Agua (IDAEA) del Consejo Superior de Investigaciones Científicas (CSIC). Tiene una larga experiencia profesional como estadístico médico con puestos en los principales centros de investigación médica de Español en Madrid y Barcelona, así como en la enseñanza a nivel de postgrado.
  • Loreto Carmona, MD, PhD, es consultora de metodología, reumatóloga y epidemióloga, y ha coordinado el Registro Español de Acontecimientos Adversos de las Enfermedades Reumáticas. Ha participado en el equipo de trabajo para Registros Biológicos de Eular (Liga Europea contra el Reumatismo), y ha contribuido al desarrollo de registros en varios países y en otras especialidades como dermatología y hematología. Tiene una dilatada experiencia en formación.


  1. Introducción – Puntos a considerar
  2. Bases de datos – organización de la información
  3. Medidas de incidencia
  4. Regresión de Poisson
  5. Análisis de supervivencia
  6. Modelos con variables que cambian en el tiempo

Las clases se subirán a una plataforma web y se entregarán además a los estudiantes en un lápiz de memoria.

Este curso está acreditado con 1,6 créditos por la Comisión de Formación Continuada de las Profesiones Sanitarias de la Comunidad de Madrid, acreditación válida para todo el territorio nacional.

Fechas y lugar

Coste del curso

500,00 € (incluye materiales, cafés y comidas)

Lo recomendamos a…

…médicos, investigadores, gestores de datos y otros profesionales interesados ​​en la creación y el análisis de los registros.