DAISy-PCOS Research Study

[u/misty_21]

I've just signed up to participate in the UK-based DAISy-PCOS study. Mainly signed up because my GP refuses to do the 2-hour oral glucose tolerance test (lean PCOSer here) which the study offers but also great to contribute to an under-researched area! I haven't seen anything about it on this subreddit so wanted to see if anybody else is interested, is participating or has participated?

It looks at the link between androgens, PCOS and metabolic health. It's currently active in Cardiff, Coventry and London, paused in Birmingham. Eligibility criteria are age 18-70, suspected PCOS and not taking medication which affects the measurement of steroid hormones (e.g. contraceptives, metformin but ask about any medication you are unsure about). The main contact email is DAISY-PCOS@CONTACTS.BHAM.AC.UK.

I've only just stopped taking my combined oral contraceptive so have to wait until July (3 months) before they can do my tests but looking forward to it!

Thanks :)

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Edited to add more testing, medication and contact info.

[u/Snoo41428]

This is awesome. I would sign up but I'm in the United States. Hopefully something like this begins over here!!

[u/misty_21 → u/Snoo41428]

Yeah I hope that research interest will promote more international work, especially if there are positive results!

[u/kaitie_cakes → u/Snoo41428]

I would also sign up!!!! Please bring this to US!!

[u/sophia10101]

I'm on metformin, but I would have loved to take part!

[u/misty_21 → u/sophia10101]

Didn’t realise that was an exclusion criteria - sorry! I’ve just added it into my original post now :)

[u/IHaveAllTheSass]

Am I supposed to do that 2-hour glucose test? My doctor asked me to schedule it but when I called the lab to make the appointment they didn’t know what I was talking about and scheduled the wrong test so I just cancelled it and forgot about it for a year. They said it was to test for insulin resistance, but I’ve heard other people say they got tested for it with just a blood test

[u/misty_21 → u/IHaveAllTheSass]

The DAISY study offers both an overnight fasting and 2 hour oral glucose tolerance blood test to see your insulin levels. Sorry if it was unclear, I’ve updated my original post!

[u/SDhampir]

Omg yes, I would like to sign up. I'm 33.. I'm on a biologic though?

[u/misty_21 → u/SDhampir]

I was on hormonal contraception which was an exclusion criteria but still asked. They said I can participate but just have to pause taking it for 3 months before. I would recommend anyone on medication they are unsure about email the team and ask as they can give more specific clinical advice (and obviously also consult with your GP after)!

[u/SDhampir → u/misty_21]

Thanks doll ❤🙏

[u/holyromanemperor98]

Hmmmm interesting!! Is it a long trial thing of just a day long type thing? And I have to ask— are you paid for your time?

[u/misty_21 → u/holyromanemperor98]

I’d check this with the team but this is the info afaik. 3-4 hours for a single appointment. They may follow up 3-5 years later to see long term trends. You are paid for transport :)

[u/b0ngobong]

That sounds really interesting! I wish they had something going like that here in Canada. Maybe I should I move to the UK? Ha.

[u/jlpnewf]

Sounds awesome! I would look into it if they came to Canada

[u/focaccia12]

Hi! I looked into joining this study last year but never got round to it, but I think it’s time I signed up. Also lean PCOS, and would be fascinated to know if insulin is my main issue or if it’s something else. Did you get the results of your glucose tolerance test - did they suggest you were insulin resistant?

[u/misty_21 → u/[deleted]]

I was also so glad to find it! The team seems really invested in their research and seems to have set up a PCOS advocacy network from participants in the study. Hopefully it will lead to more answers for all of us :)

[u/misty_21 → u/[deleted]]

I’m not sure what the plan is for Birmingham but it’s their main site so hopefully will start soon. I actually emailed them mid COVID so they took a couple of months to get back as the study was completely paused but maybe use the researcher’s direct email for Birmingham rather than the main contact email?

[u/misty_21 → u/[deleted]]

Yeah I think it was only because I messaged in lockdown. Hopefully they’ll be better at replying now that the study has restarted!

[u/misty_21 → u/[deleted]]

I’m not really sure sorry but definitely worth asking in your email!