Exploring symptom perception in Pernicious Anaemia : Research participants needed

20 Jul, 2018

* Update: this study is now closed. Thank you all very much who participated!*

An opportunity for you to participate in an online study that focuses on exploring the symptoms of Pernicious Anaemia.

Aim of the study

To establish how (and if) physical and psychological symptoms of the condition change over the 12-week treatment period.

This post aims for recruitment of volunteers for project reference number: 10256, approved by the Psychology Ethics Panel of Cardiff Metropolitan University. You are under no obligation to reply to this post, however if you choose to, participation in this research is voluntary and you may withdraw at any time. If you wish to participate in the study, you will be entering a prize draw for £30 Amazon Voucher, which one of the winners will receive after the completion of data collection.

To be eligible to take part in the project you must be:

  • A Member of the Pernicious Anaemia Society
  • Have a diagnose of Pernicious Anaemia (not just B12 deficiency) for at least one year
  • Receive 12 weekly injections
  • Do not take any other B12 supplementation
  • Aged 18 or over

If you meet the inclusion criteria and wish to take part in the study please carry on reading for more information.

If you wish to proceed on with the study, then you can expect the following:

  • Each week you will be sent a link to an electronic questionnaire.
  • In week one you will be asked to provide some basic demographic information and some details about your current treatment for you PA. You will also be asked to provide the date of your last B12 injection. You will be asked questions about your PA symptoms and mood.
  • Over the next 11 weeks you will be prompted by email to fill out an online questionnaire which will take about 15-30 minutes. This will ask you questions about your PA symptoms and mood. Your continued participation in this research study is indicative of your consent.
  • All data collected will be kept anonymous. This means you will never be referred to by name in the study. You will be assigned a unique identifier code, and only the researcher will know which code you have been allocated.

Your Commitment

  • You will need to complete an online questionnaire weekly for 12 weeks
  • You have the right to withdraw from the study at any point during the 12 weeks of data collection without giving a reason. After this 12 week period the data will be analyzed, and you will be unable to withdraw your data during this phase.

If you feel you would be interested in participating in this study, and meet the Participation Criteria, please click the button and enter your email, and you will be contacted by the researcher with more information and study links.

Thank you so much!

11 Comments

  1. Patricia O'Connor

    I would love to be in the study. My parents are from Tipperary, Ireland.
    I wasn’t diagnosed with PA because my dr. gave me injections every week after my B12 level dropped to
    180, now in 2018 I take 500 cc every 3 weeks
    My genetics stated I had a rare anemia from Tipperary Ireland so I know I have PA but it’s not showing up in the blood work. I was told to stay on supplements from dr. but wonder about absorption in blood? Patricia O’Connor, B.A.Sc. Nutrition

    Reply
    • R Guin

      My mums mother’s had Pernicious Anaemia over 70 years ago and spent over two years in hospital whilst she recovered from it, her small children were put into a home as there was no one to care for them till she recovered. I recently have been diagnosed with it now but luckly can be treated with B12 injections which was not available back in here day! I also have underactive thyroid which doesn’t help

      Reply
  2. Rita Fanning

    I developed pernicious anaemia as a fourth auto immune condition last year. I developed hypothyroidism in my fourties. Vitiligo in my fifties; type one diabetes three years ago and pernicious anaemia last year. As I have four children I would like to find out more about these conditions and how I can help my four children should they develop any of these conditions. One son developed hypothyroidism in his teens so he seems vulnerable

    Reply
  3. Brent Dale

    I would like to take part in this survey as I meet most of the criteria, however I have B12 injections on an 8 weekly cycle following advise to my GP from a Neurological Consultant. My symptoms have always returned at the 6 week point and continue to do so, the more frequent injections thankfully shorten the down time and lessen the impact.

    If you would like my input please let me know.

    Thank you

    Reply
    • Mahrukh Munir

      Hi Thank you for showing your interest in the study. How ever the inclusion criteria to be part of the study requires you to be receiving 12 weekly injections so I’m sorry that you can’t take part. Thank you so much for showing your interest.

      Thank you.

      Reply
  4. William Grocott

    I would like to take part in the survey as I was diagnosed with Pernicious anemia in March this year, although I had the symptoms a long time before the diagnosis. My mother has had PA for over 20 years and my great grandfather died of PA. I have had my 6 jabs over 2 weeks and my first 3 monthly injection at the beginning of July and I am still suffering some of the symptoms already. I have three children and I want to gain more knowledge of PA and what I can do to help me and my family.

    Regards

    Reply
  5. Amanda Ward

    Shame its only for those on 12 weekly injections. I get mine 8 weekly and still get a range of symptoms return well before the next one is due

    Reply
    • Angie

      I am exactly the same – been on 8 weekly cycle for about a year now yet I really feel a decline at around 6 weeks – sometimes easier to battle through than others

      Reply
  6. Linda Cadle

    I would have liked to but I now get injections 10 weeks which I had to fight just to get to that.I got fed up trying and now self inject nearly weekly.My level was 55 when I was diagnosed just over 2 and half years ago.I live Bridgend.

    Reply
  7. Anne Macdougall

    I was diagnosed May last year. I self inject 50mcg four times a day. The Neurologist I saw at the end of June this year told me that if he had his way we would be all back on one injection every three months. I see no point in going back to someone who chooses ignore patients suffering. I will contiune to self inject, it is my life not his.
    I hope the studies and research proves that one size does not fit all and the damage that is being done to people’s health because of doctors such as this Neurologist.

    Reply
  8. Kelly Graham

    Hi all,
    Im 38 and I have been diagnosed with pernicious anemia a couple of months back.
    This was due to my sudden shortness of breath and fatigue. Blood tests showed PA.
    Prior to a couple of months ago and this diagnosis I was a very fit and healthy mum of 2 with 3 jobs. Now I’ve had to give two of them up and feel I am getting worse even though I’m receiving injections.
    Is this normal? I’m really very scared
    Kelly

    Reply

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