It is now one week since I invited all of you to participate in an RLS survey for EARLS. I have received about 50 expressions of interest, which is much better than the figure we had at the end of last week but still disappointingly low, given that the forum has 622 users. About 8% of the forums users have agreed to take part. Some of you are members of RLS-UK and will therefore receive your copy of the questionnaire over the coming two weeks. However, this still leaves many, many forum users who will not have taken part and whose voices may therefore not be heard.
Completion remains voluntary but this is a unique opportunity for all of our voices to be heard. I regularly read comments by people on the forum complaining about the (low) level of RLS awareness among the public, politicians and medical practitioners. This survey is intended to address many of those concerns.
I sincerely hope we can get more of you to take part. It will only take a few minutes.... please help us to help you....
The European Alliance for Restless Legs Syndrome (EARLS) is an umbrella organisation of European patient advocacy groups, including RLS-UK. The Chair of RLS-UK is also a board member of EARLS.
EARLS is carrying out the largest study of RLS ever conducted, working with international RLS partners to develop the best possible picture of how RLS affects people's lives.
RLS-UK is assisting this research by coordinating the UK's input into the study. To date, over 4,000 people worldwide have taken part. While the study was previously carried out in the UK, the response rate was very poor. I hope we can now change this.
I would encourage as many of you as possible to take part and complete the questionnaire, even if you have done so previously. This is our chance to be better represented at a national and European level.
If you would like to take part, please email me firstname.lastname@example.org and I will forward you a copy of the questionnaire. The document is in Excel (to make completion easier) so I would ask that you to complete the excel sheet and then return it to me via email. I will then collate the responses. If you cannot use Excel or do not have the software, please email me your name and home address and I will post a copy of the questionnaire to you.
RLS-UK members please note: This questionnaire will be sent later this month with your Newsletter so there is no need to complete the survey for the moment.
I hope lots of you will be willing and able to help and therefore request that you put the word 'QUESTIONNAIRE' in the subject line of your email as it will make processing your requests significantly easier.
Those from outside of the UK are also welcome to complete the survey though this can only be done electronically i.e. we are unable to post copies of the survey abroad.
Thank you in advance to all who participate. As always, please feel free to contact me email@example.com if I can be of any specific assistance.
Daragh, Chair RLS-UK