Pernicious Anaemia and Iron Deficiency - Survey for members

[PAScomms]

Some of you may have seen a post about this survey or will have received an email from the Pernicious Anaemia Society. For clarity we are posting this again separately and hope that many of you will sign up to membership and take part. We are also running a seminar on this topic this month shop.pernicious-anaemia-soc...

This is open to members and non members.

PAS is working in collaboration with a PhD student from the University of Surrey to conduct research that is aiming to improve the management and understanding of pernicious anaemia/anemia. He has asked PAS to post this information below:

"Initially, this survey was limited to those with a confirmed diagnosis of pernicious anaemia to strengthen the data, especially for a research publication. However, we understand that many people face challenges in getting a definite diagnosis due to poor diagnostics, and there are ongoing issues around what should count as a "confirmed" diagnosis of PA. This can mean that many people who likely have PA cannot receive a formal diagnosis due to these limitations.

To make this research as inclusive as possible, the University of Surrey has now made the change to the survey wording to include all PAS members whether you have a confirmed, probable, or suspected diagnosis of PA. This approach lets us gather a wider range of experiences within the PA community.

In the survey, there is a question asking whether you have a confirmed diagnosis, and you can answer according to your circumstances. We encourage all PAS members to take part, as every response will help us gain a better picture of PA and its impact."

PAS encourages everyone who has or thinks they have PA to take part. You do need to be a member of PAS to take part in the survey. This is because membership fees fund our important research work. We are the only charity worldwide funding such research into Pernicious Anaemia.

pernicious-anaemia-society....

[Nackapan]

How do you access the survey please?I've not received an email .

I'm a member of PAS

I would like to contribute

[PAScomms in reply to Nackapan]

Assuming that the email has not gone into your junk folder, please can you send an email to [e-mail] so that our membership secretary can check we have your correct email details.

Members can also check this by logging on to our website as a member and making sure all your contact details are up to date.

thank you

[Nackapan in reply to PAScomms]

I've checked everywhere will send an email

[Wheat in reply to Nackapan]

hello, I signed into pas members site, then looked at My Account. It has many sections, scroll down and one section has link to Surrey survey.

I missed it first time as I did not scroll down enough, its well past renewal details.

X

[PAScomms in reply to Wheat]

this is the general survey for the biobank, not the Iron survey. the iron survey has a link in an email which was sent to UK members

[Wheat in reply to PAScomms]

Oops sorry. and to Nackapan too!

[Nackapan in reply to PAScomms]

Still not recieved it .I verified my email address as requested .

[PlatypusProfit8077]

Hello, is the survey limited to UK members? I’m in Australia

[PAScomms in reply to PlatypusProfit8077]

The survey is for UK members and over 18 years old on this occasion. Universities have to get ethics permission to conduct a survey and this is the permission for this survey. We do plan to do surveys for other countries in the future as membership increases.

[PlatypusProfit8077 in reply to PAScomms]

Thank you! I look forward to reading the results of the survey!

[DevH]

please note the survey is not limited to confirmed diagnosis but you do have to be a PAS member……

I wrote to Alfie Thain the researcher and he confirms below…..

Please accept my apologies, this is an error on my end. You do not need a confirmed diagnosis as long as you are a member of PAS that is ok.I should have specified that the criteria include both confirmed and probable/suspected pernicious anaemia diagnoses. There are many challenges associated with diagnosing PA as you have rightly mentioned, which means that many individuals likely have the condition but cannot receive a confirmed diagnosis due to these limitations. In the survey, there is a question that asks whether you have a confirmed diagnosis, and you can answer as you see fit.

Thank you for your interest in our research.

If you have any further questions, please do not hesitate to email me.

Kind regards

Alfie Thain

Postgraduate Researcher

University of Surrey

[Nackapan]

Please provide a link as still can't access

[PAScomms in reply to Nackapan]

I have asked our IT manager to get in touch with you, but maybe would be a good idea if you email her via the contact address on the website too.

[PAScomms in reply to Nackapan]

the link will be in the upcoming newsletter I believe which I understand from our membership secretary you do receive