Moorfields Study in London England - they need people to participate - UPDATE

[Guest guest]

Hi everyone

Some of you may have read an earlier post on this topic, but for those of you who are new, I will start from scratch.

Moorfields Eye Hospital in London England are conducting a study on BPES and infertility. Previously, they were only able to see people who are, or were, patients of the hospital. It turns out that they don't have enough people, and so they are extending the study. (Just to be clear, this is only a potential problem for females.There is no known association between infertility and BPES in males).

What type people do they need?

Females, aged 18+, who have BPES

Can anyone participate?

Yes, you don't have to be from the UK. There is a small travel budget. For example, the equivalent of a "return train ticket".

Arranging the consultation. How does that happen?

They sent me a long letter, explaining what is needed, why they are doing the study. I then filled out a short form and sent it back, saying that I was happy to participate. Then they sent me even more information.

What is involved?

I had a consultation with the person running the study, a very nice specialist from New Zealand, who is working for the Mr Collin (whom we have all heard of, and who has done some wonderful work on people with BPES)

When I went along, I spent about 30-40 minutes being examined by him. I had plenty of time to ask questions.

Then I gave a small sample of blood.

After my meeting at Moorfields, (which happened not to be on the same day, but I guess could have been) I visited a specialist at Guy's hospital. The specialist is female, and an expert in assisted fertility.

Why participate?

This is a great opportunity to be seen at Moorfields Eye Hospital. I know there are many very good hospitals all around the world. But in my opinion, it would be a good chance for people to get seen by somebody who has met so many people with BPES, and to get some advice, and have some questions answered.

I really cannot stress how friendly both specialists were. When I told them that we have a group, they were very pleased to learn that our group may be able to help them to find more participants. Also, I think that if as a group we establish a good relationship with these people, then they are likely to share their findings with us, answer any questions, and for people who live fare away, assist in recommending specialist care providers.

So - if you are thinking of participating - what do you do next?

1. You can ask me some more questions, I will be happy to help out

2. You can contact the person running the study directly Hardy: hardy_thomas@...

Just so that I get some idea of how much progress in contributing, it would be nice if you let me know - but I respect your privacy if you want to keep that to yourself.

What if I am thinking of participating, but accommodation in London is a problem?

Please let me know, and I will try to help you sort something out.

Shireen Mohandes

London, England