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2 June 2014

ESCIF is actively involved in an investigation into SCI consumer participation in research and clinical trials. International researchers often find it hard to persuade us to take part in their projects and the aim of the online survey is to identify why this should be the case.

A letter has been sent to ESCIF members … and to the Ambassadors and supporters of the Global SCI Consumer Network.


Dear Colleagues


As you may have read on the ESCIF website or in the December 2013 Newsletter, at the ISCoS meeting in Istanbul I was invited to speak at a workshop on international collaborations in SCI research. My presentation emphasised the role of SCI consumers as active stakeholders in international SCI research.


A major focus of the workshop was to identify the factors that make it difficult to carry out international research projects – both from the viewpoint of the researchers and from that of people living with SCI who may wish to take part in, for example, clinical trials. It was decided to initiate two parallel surveys to investigate these barriers and what could be done to remove them; the first survey targets SCI researchers, the second investigates the problem from the angle of SCI consumers.


I have been involved in setting up the SCI consumer survey which will be led by Dr Kim Anderson from the University of Miami and the Miami Project to Cure Paralysis. In addition to being an experienced researcher in SCI, Kim also has a spinal cord injury and is one of the Global SCI Consumer Network ambassadors in US.


The short questionnaire (which is in English) can be accessed on this link https://www.surveymonkey.com/s/sciclinicaltrialssurvey. Of course, I hope that you will find a few minutes to fill out the questionnaire – but I would also ask you to forward this mail to others in your organisation.


As, in addition to the ESCIF countries, we are planning to survey people with SCI globally, it is not possible for us to provide translations of the questionnaire into all languages. So – if you feel that your members will be able to cope with the questionnaire in English, please publicise the survey and the link in your members’ magazine or on your website. Otherwise, perhaps you could use the questionnaire during meetings or other activities in your organisation and return the responses in the English version. Finally, if internet connections in your country are poor, it may be possible to print out the questionnaire and return them to Kim.


We would like to achieve at least 25 respondents per organisation – although we are interested in receiving replies from as many countries as possible even if the number of responses falls below this target. We need to receive the completed questionnaires by 31 July 2014. After this date the link will be closed.


I hope that you will support us in this global effort to include our collective perspectives on clinical trials in order to better inform researchers during the research design process.


Thanks in advance for your help.


Best regards


Jane Horsewell                                                       Kim Anderson

ESCIF President


Worldwide SCI consumer survey was posted by ESCIF.
To discuss any of its subject matter further please contact ESCIF.

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