Participant Feedback on the MS Regsiter: 1 Year Since Website Relaunch

  1. How long have you been a participant on the MS Register?

Approximately 8 years

  1. How was it you came to be involved with the MS Register?

Advert via Facebook – I think – sorry long time ago now

  1. Why do you feel it’s valuable to contribute data to the MS Register?

I am 100% honest about how my MS affects me.  I don’t feel I am put on the spot or being judged.  If it helps any research – then that can only be a good thing. No needles, poking or prodding in this research,  so happy to answer and be part of this register

  1. Do you find the portal to be a useful, personal tool for your MS?

It is easy to use and it is good to look back at previous answers to see how, if and when things have changed.

  1. Do you have any other positive experiences of the Register that you’d like to share?

It is good to feel as if you may somehow help researchers understand what living with MS is like.

MF, Hampshire

 

  1. How long have you been a participant on the MS Register?

I do not know, I believe ever since the Register started I think

  1. How was it you came to be involved with the MS Register?

I have always followed the MS Society and when the register commenced or as soon as I was invited I accepted that opportunity

  1. Why do you feel it’s valuable to contribute data to the MS Register?

I believe that if I can add or offer anything to aide the research with regard to MS and its cure or symptom relief I would like to do that and always believe in giving something back

  1. Do you find the portal to be a useful, personal tool for your MS?

I find the portal interesting more than useful personally

  1. Do you have any other positive experiences of the Register that you’d like to share?

I have nothing particular to offer. I do believe the questionnaires need to be reviewed more diligently and cross referenced to the various different entities that are looking for the appropriate information and feedback as it does become somewhat repetitive and unnecessary answering the same question in principle a number of times when completing the questionnaires each time.

M. Pearce, Suffolk

 

  1. How long have you been a participant on the MS Register?

I can’t exactly remember how long I’ve been on the MS Register but I guess it’s about 7 years or so.

  1. How was it you came to be involved with the MS Register?

I received an email from the MS Register asking if I would participate. It seemed like a good idea and I’ve been participating ever since.

  1. Why do you feel it’s valuable to contribute data to the MS Register?

Anything that helps research into MS that may eventually make life easier for MS sufferers or even find a cure has to be a good thing. It’s no good burying your head in the sand and let others do it.

  1. Do you find the portal to be a useful, personal tool for your MS?

In a way. I appreciate researchers are looking for one’s experience within a snapshot of time but I feel like I want to say more. I find it a bit frustrating that I can’t expand on the answers. Having said that, having been involved in conducting surveys myself, I realise researchers don’t want people ‘rabbiting’ on. Not only do I have great difficulty walking, I can no longer drive due to MS. After 50 years of driving I find this has taken away yet more of my independence. Maybe the surveys aren’t interested if one can get around outside but it’s all part of living with MS.

  1. Do you have any other positive experiences of the Register that you’d like to share?

Some of the surveys provide results in the form of a graph. I find these particularly useful to compare my well-being from a few months, or years ago.

B. Eaton, Hampshire