Bardet-biedle Syndrome

Response to this request is long overdue. By law, under all circumstances, Oxford University Hospitals NHS Foundation Trust should have responded by now (details). You can complain by requesting an internal review.

Dear Oxford University Hospitals NHS Foundation Trust,

Could i please request information relating to the below

If you treat Bardet-biedle Syndrome, how many unique patients have you treated in the last 12 months?

What % of these patients get a genetic diagnosis prior to them being referred onto specialist centres?

If you do not treat Bardet-biedle Syndrome, could I request where these patients are referred to?

Yours faithfully,

Ed Fryer

oxford@infreemation.co.uk, Oxford University Hospitals NHS Foundation Trust

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Freedom of Information Team
Oxford University Hospitals NHS Foundation Trust
John Radcliffe Hospital
Headley Way
Headington
Oxford
OX3 9DU

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1. https://oxford.disclosure-log.co.uk/
2. https://www.ouh.nhs.uk/about/foi/what-we...
3. http://www.ouh.nhs.uk/privacy/

noreply@infreemation.co.uk, Oxford University Hospitals NHS Foundation Trust

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Your reference number is F22-8443 in relation to %%subject%%. Please keep
a note of this reference number if you want to contact us about your
request.

Your request may already be answered by our responses to previous requests
on our publication scheme. Our publication scheme can be found on this
webpage - [1]https://oxford.disclosure-log.co.uk/.

As we have taken longer than 20 working days to respond, you have a right
to complain to the Information Commissioner's Office (ICO) about us -
[2]https://ico.org.uk/make-a-complaint/offi....

If you are looking for Trust expenditure information, this is available on
this webpage - [3]https://www.ouh.nhs.uk/about/foi/what-we....
This will list all expenditure payments of £25,000 or more by month.

For information about how the Trust processes personal data, or if you
want to make a request for personal data (including medical records),
please refer to our privacy notice - [4]http://www.ouh.nhs.uk/privacy/.

Kind regards

Freedom of Information Team
Oxford University Hospitals NHS Foundation Trust
John Radcliffe Hospital
Headley Way
Headington
Oxford
OX3 9DU

References

Visible links
1. https://oxford.disclosure-log.co.uk/
2. https://ico.org.uk/make-a-complaint/offi...
3. https://www.ouh.nhs.uk/about/foi/what-we...
4. http://www.ouh.nhs.uk/privacy/