FFA RESEARCH - DNA (saliva) SAMPLES NEEDED

Dr Christos Tziotzios MA, MB BChir (Cantab) MRCP (UK), MRCPE, FHEA

NIHR Academic Clinical Fellow & Specialist Registrar

Genetic Skin Disease Group, St John's Institute of Dermatology

Guy's Hospital, London, United Kingdom

I meet this doctor at a patient support group meeting recently.  He is involved in research into the cause of FFA and needs our DNA.  If you live in UK or any other country he will telephone you and send you a kit through the post to collect our saliva.

Please email him to become involved:

christos.tziotzios@kcl.ac.uk

 

THIS THREAD IS FOR YOUR INFO ONLY...

Views: 402

Replies to This Discussion

Permalink Reply by Pam on December 20, 2013 at 4:14am

I am doing my saliva sample today. Not sure I like the idea of giving a skin sample so much though...sounds a bit painful! When would that take place, and who takes the blood and skin samples do you know?

Permalink Reply by claire on February 6, 2014 at 4:46am

Hi Pam,

I've just signed up to this website and had FFA for 18 months. Have you had any feed back from this test? I emailed the Doctor yesterday and hope to be involved.

Claire.

Permalink Reply by Sandy on December 25, 2013 at 12:23pm

I spoke to him on the phone 3 weeks ago and he said I qualify for his study, but I have not received a sample kit yet.  Was just wondering how long it takes?  I live in the U.S.

Permalink Reply by Sandy on January 3, 2014 at 7:47pm

I got my kit today.  I guess it probably takes a long time to get to the US from England.  I am excited about participating in this study!

Permalink Reply by Sandy on January 11, 2014 at 10:53am

Carol, did your Consent Form and Patient Information Sheet say it was for a study called "Characterisation of molecular and structural skin abnormalities in inherited skin disorders"?  It mentions giving blood and a piece of skin - doesn't say anything about saliva.  I was just wondering if he sent the right paperwork...

Permalink Reply by Meme on February 9, 2014 at 8:10am

Hello

I have had FFA for 10 years now not knowing what it was. My local hospital had not seen anything like it before and just said it was normal alopecia, which I knew it wasn’t. I stumbled across this site and the penny dropped. After research on the internet I definitely have FFA. I first lost my sideburns then it started to attack the front of the hair line. I have lost 2 inches over the 10 years. I have sent an email to the doctor in London but then realised that your comment was posted back in 2013, so I might be to late. I have never met or talked to anyone with the same problem as myself before.

Meme

Permalink Reply by claire on February 9, 2014 at 11:22am

I recently(last week) sent an email to this Doctor and have not heard anything back. Does anyone know if it is too late to be a part of the research?

Claire.

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