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Frontal Fibrosing Alopecia Research

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fraggle44 View Drop Down
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Joined: 08/June/2011
Location: Leeds/Bradford
Points: 227
Post Options Post Options   Quote fraggle44 Quote  Post ReplyReply Direct Link To This Post Topic: Frontal Fibrosing Alopecia Research
    Posted: 20/January/2016 at 3:05pm
Hello, 

The following is details of a study into Frontal Fibrosing Alopecia (FFA) and I am posting on the forum in case any of you with FFA would like to take part: 

Dr Christos Tziotzios, an academic specialist registrar in Dermatology, is working with John McGrath, Professor of Molecular Dermatology, Michael Simpson, Professor of Genomic Medicine and Dr David Fenton, Consultant Dermatologist and Expert in Hair Disorders, at St John's Institute of Dermatology in London on genetic aspects of frontal fibrosing alopecia (FFA).

The team of researchers are collecting DNA samples from individuals affected by FFA and would be delighted to see you in their Research Clinic, which takes place at Guy's Hospital in London. A number of clinicians in other UK cities and towns are registered collaborators and it may be possible for you to be seen locally. 

The research appointment involves taking a blood sample for extracting your genetic material (DNA) and a focused clinical history and lasts 20-30 minutes on average. The research study is supported by a Fellowship award to Dr Tziotzios by the National Institute for Health Research (NIHR), has been ethically approved and adheres to Good Clinical Practice guidelines. 

The aim is to understand the genetic basis of this distressing condition with the hope to better direct future treatments. To participate in the research or for any questions or clarification please emailchristos.tziotzios@kcl.ac.uk.

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Pavla View Drop Down
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Joined: 15/June/2014
Location: Newcastle
Points: 83
Post Options Post Options   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 20/January/2016 at 8:21pm
I heard about this early last year and contacted Christos.  Fortunately my Consultant is taking part in the research so I don't have to travel down to London, so its definitely worth checking locally (that is if you're not near London of course Smile).
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Chrissy70 View Drop Down
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Joined: 23/March/2016
Location: London
Points: 13
Post Options Post Options   Quote Chrissy70 Quote  Post ReplyReply Direct Link To This Post Posted: 26/March/2016 at 7:22am
Hi I've only recently been diagnosed with FFA. My mother has it too. I note the post was January are you still looking for people?
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Happy days View Drop Down
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Joined: 11/July/2015
Location: Wirral
Points: 8
Post Options Post Options   Quote Happy days Quote  Post ReplyReply Direct Link To This Post Posted: 21/November/2016 at 11:20pm
Hello. Have posted elsewhere on the site tonight for the first time (even though I joined last year). I was diagnosed with FFA by a trichologist in May 2015 and have been using Regaine for men 5% as advised - things don't seem to have got any worse, but difficult to tell with the slow progress of it and for quite a few years I thought it was just a little bit at the sides which I could cover, but then realised the front was receding and more of my forehead was showing etc - fringe breaking up and looking wispy. Would like to take part in the research, but after reading general information from Alopecia UK and elsewhere, wonder if it is best to get a dermatologist diagnosis which may give me a few more treatment options?

Any advice welcome - new to the forum so not quite sure where best to post!
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Chrissy70 View Drop Down
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Joined: 23/March/2016
Location: London
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Post Options Post Options   Quote Chrissy70 Quote  Post ReplyReply Direct Link To This Post Posted: 22/November/2016 at 5:59am
Hey I'm fairly new at this too! I had my diagnosis via a dermatologist. I had a biopsy to confirm. Can only suggest that as the way to go. Hope you get some answers.
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Flic View Drop Down
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Joined: 17/April/2014
Location: United Kingdom
Points: 10
Post Options Post Options   Quote Flic Quote  Post ReplyReply Direct Link To This Post Posted: 02/August/2017 at 6:20pm
Hi.
Are there any results from this research yet?
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