Reunión del proyecto EMOCIONAR
Reunión del proyecto EMOCIONAR
¡Ya estamos oficialmente en Conde de la Cimera! Bueno, en realidad llevamos aquí desde abril, pero el 18 de noviembre (¡jorl!¡¡¡ya ha pasado un mes!!!) hicimos la inauguración, a la que vinieron nuestros amigos y a los que queremos agradecer su continuo apoyo y alegría contagiosa.
¿Y por qué lo de la pecera? Pues porque InMusc late en un despacho de cristal en el epicentro de Atención Reumatológica Integral (ARI), dirigido por nuestro amigo Pepe de la Mata, al que continuamente damos que pensar… Esa es la misión de una unidad de investigación, ¿no?
Buenos días, Loreto. A ver si me puedes aclarar esta duda.
Aun no tengo clara la diferencia entre estudio transversal y longitudinal.
Entiendo que transversal es un periodo limitado en el tiempo y longitudinal sería seguir a los mismos pacientes en diferentes momentos de su vida. ¿Pero entonces un estudio observacional, prospectivo o retrospectivo, que dura dos o tres años puede ser trasversal?
Lo de transversal o longitudinal es en cuanto a la observación de cada paciente, no de todos los pacientes.
En el diseño transversal cada tipo de datos se recoge una sola vez. Esto no quita que un día puedas recoger los datos de la historia y exploración, otro los análisis y otro las pruebas de imagen. Pero cada tipo de datos se recoge una sola vez para cada paciente, de una tacada. No hay que especificar el tiempo de seguimiento en el diseño, porque no hay seguimiento.
En el diseño longitudinal cada paciente tiene al menos dos visitas o momentos de recogida de datos, la basal y la final, y en ambas se pregunta por el outcome, en la basal generalmente para asegurarnos de que este no está presente y en la de seguimiento para ver si el sujeto en estudio lo ha desarrollado o no. Casi siempre hay más de dos visitas, estableciéndose la periodicidad a priori en base a la frecuencia y rapidez de aparición del outcome de interés. El tiempo que transcurre entre la visita basal y la final es la longitud del estudio, que hay que especificar en el diseño.
Recuerda que cuando hablamos del tiempo de un estudio este se refiere al tiempo de observación por paciente, no lo que tardes, o estimes que vas a tardar, en hacer el estudio. Esta última información sobre los tiempos del estudio (periodo de reclutamiento, periodo de recogida de datos, periodo de manejo de datos y análisis…) va en el plan de trabajo, no en el apartado diseño del protocolo.
En algún estudio, lo que nos interesa puede ser ver cómo ha cambiado un parámetro poblacional en el tiempo, por ejemplo, la tasa de cirugías bariátricas de una década a otra. En este caso, aunque se hagan dos medidas en el tiempo, generalmente retrospectivas, las medidas son transversales, porque no afectan a los mismos pacientes. Se hacen dos cortes transversales de la población, no dos observaciones en un paciente.
Espero haber aclarado algo.
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.
FEEDBACK FROM THE EULAR EXECUTIVE
The website (www.eular.org) 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 (http://rmdopen.bmj.com) 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 hcuge.ch) 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 (www.eular.org/edu_course_epidemiology.cfm). 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 (www.congress.eular.org) . 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:
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.
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.
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: www.congress.eular.org. 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)