Research Recruitment Finally Complete

by | Feb 17, 2016 | 2 comments

Yesterday afternoon I received an email with the names and addresses of twelve patients who have been diagnosed as having Pernicious Anaemia and who manage perfectly well on a replacement therapy injection every three months.

It says something about the treatment regimen in the UK that it has taken us 18 months to find twelve people who are non-symptomatic and lead a normal life with just a three monthly injection to keep them going.  None feel any symptoms returning before their injection.  It was relatively easy to identify twelve patients who need monthly injections and who are still symptomatic; likewise it was relatively easy to recruit the twelve ‘controls’ who are people with no B12 issues.  But it has been a problem in recruiting patients who manage their condition well on the twelve weekly injection.

The research programme can now begin in earnest and many thanks to all who volunteered to take part.  Prof. Hunter has now chosen all 36 participants who will next week receive the following information in this order:

1 Thank You Letter along with a Consent Form and Patient Information Leaflet that will provide the names and contact details of Drs who will provide more information on the study if it is needed.

2.  Urine Sample Kits.  These will come with instructions and a pre-paid envelope that is addressed to the society’s offices.  We will freeze the samples and batch transfer them to a laboratory in Cambridge.

3.  Stool Sample kit (PooPot) with instructions and pre-paid envelopes that are to be returned to a laboratory in Port Talbot where the investigation will take place.  Please note that you must not send the sample back on a Thursday or Friday as there will be nobody to collect the sample on the week-end which mean they will spoil.  Please telephone the Laboratory using the number given so that they can look out for your sample.

Hopefully this project will help doctors to understand why some people need much more frequent injections than others.  Fingers crossed.

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  1. Georgia garrigan

    My daughter was diagnosed last Feb withPA, she was 18 then. She continually feel tired and regularly feels like she has a urine infection but the samples always come back clear. The doctor has been treating for 3 yrs, once she got the injections the pain disappeared. I am wondering if anyone else has said anything about urinary issue or pain who has PA. I feel like at my wits end with GP who don’t listen that I think they are related and she need more regular injections . Thank Julie Garrigan .

    • Martyn

      Please telephone the office to discuss this. Please make sure that you are a member of the society as we can only offer telephone advice to members


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