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Scleroderma & Raynaud's UK (SRUK)

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Participants required for Raynaud's study

dannyclegg profile image
11 Replies

Hello my name is Danny and I am conducting a study into the effect of different temperatures on the hands of people with Raynaud's phenomenon/disease, using infrared imaging. Some of you may have read the advertisement in the RSA Hot News newsletter last month, and I thank those of you who have responded.

I am now almost at the stage of sending out information sheets to the volunteers who I have spoken with so far, but for the study to be more effective I would ideally like more participants.

The study will be commencing in March 2013, and will require a further 2 visits at the 6 month (September 2013) and 12 month (March 2014) interval for subsequent infrared imaging. The study location is the University of Glamorgan, Treforest (near Pontypridd), South Wales, Mid Glamorgan. I appreciate that travel may be difficult from afar, but if you are interested, and are able to participate, it will be greatly appreciated.

I am keeping the recruitment open this until Monday February 18th, to allow time for people to read this and (hopefully) tell anybody they know with the condition about the study.

Anybody who has the condition (at any stage and any severity) is interested, even just to the point of receiving an information sheet, is under no obligation to commit to the study, and may withdraw at any time , and without reason.

For further information and/or to express an interest in participating, please email me at dclegg@glam.ac.uk. Please note I am able to attend to emails this week up to and including Friday 8th February, however I will be away until the 18th February. Please note that if you email during the time I am away I will respond to you on the morning of the 18th.

Many thanks and hope you can take part!

Danny Clegg

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11 Replies

Welcome Danny. Trish here. Left a message already with the Question side.

dannyclegg profile image
dannyclegg in reply to

Thanks again :)

rjericks profile image
rjericks

Thanx Danny...I let the UK folks in our FB R's group know about this :)

dannyclegg profile image
dannyclegg in reply to rjericks

Thank you very much :)

dawn1972 profile image
dawn1972

I would love to participate but unable to travel that far since i live in Michigan. You would love me as a candidate. I have severe raynauds in my hands, knees, and feet. I cannot tolerate many temps. If it is 80 degrees out and if the wind blues i will have an attack. My hands are Vertu rarely of normal color. If they are not white, blue, purple, then they are swollen and red.

dannyclegg profile image
dannyclegg in reply to dawn1972

That is a shame, on two fronts! Both the symptoms and the travelling distance. Hopefully in the future there will be more studies closer to you. Have you tried searching for studies on the RSA website or NHS choices? (The latter is a UK website but may have a list of trials/studies near Michigan)

I will willingly take part in your study,i do not live near by,but if i could have a little notice,i may be able to come and stay in the area for a few days,please let me know if you would like me to take part,i will send an email to the address you have given above also.TIM.

dannyclegg profile image
dannyclegg in reply to

Thank you Timbo, I have sent you a response to your email which should hopefully give you enough information, but if you need more please do not hesitate to ask

tinaparkii profile image
tinaparkii

I would but no way of Getting there at all sorry. I live between Bolton and Manchester. But I had this done at Salford royal. (hope hospital) in December 12. Thermography. Was amazing watchin the colour changin back. Took a while for mine. Especially 1 of my little fingers. It wasn't even showing at all for few minutes. I looked like I had only 3 fingers and a thumb on this hand. Hope you manage to get the people to go do it for you

dannyclegg profile image
dannyclegg in reply to tinaparkii

Thank you very much for your response on here. It is very interesting to hear you say that, as it is a common problem when trying to image the hands suring vaso-shutdown! I'm glad you found the experience interesting though, I think it is an excellent visual tool to help people have an understanding of what is going on! Keep an eye out for any further studies, and hopefully you can make it in the future.

many thanks

Danny

tinaparkii profile image
tinaparkii

Will do and thank U. Was a cold experience having put my hands in icy water but to watch them was great.

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