Bardet-biedle Syndrome

The request was partially successful.

Dear Nottingham University Hospitals NHS 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

Dear Ed Fryer

 

Thank you for your request for information about Bardet-biedle syndrome. 
Your request was received on 6 January 2023 and we are dealing with it
under the terms of the Freedom of Information Act 2000.

 

Nottingham University Hospitals NHS Trust (NUH) came into being on 1st
April 2006 and assumed responsibility for the services provided by both
the Queen's Medical Centre (QMC) and Nottingham City Hospital NHS Trust
(NCH).

 

In some circumstances a fee may be payable and if that is the case I will
let you know. A fees notice will be issued to you, and you will be
required to pay before I will proceed to deal with your request.

 

You will receive the information requested within 20 working days allowed
under the Act unless the Trust does not hold the information or there is a
reason for it to be withheld. I will write to you in any event.

 

If you have any requirements regarding the format any information should
be supplied in, e.g. the language to be used, audio, large print and so
on, then please let me know.

 

If you have any queries or concerns then please do not hesitate to contact
me. Please remember to quote the reference number above in any future
communications.

 

Further information about your rights is also available from the
Information Commissioner at:

 

Information Commissioner's Office
Wycliffe House 
Water Lane 
Wilmslow 
Cheshire 
SK9 5AF 
Telephone: 0303 123 1113
[1]www.ico.gov.uk

 

Yours sincerely,

 

Information Governance Officer

Information Governance Team

[2][Nottingham University Hospitals NHS Trust request email]

 

 

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Freedom of Information Act 2000 - unless legally exempt from disclosure, the
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Copyright of this email and any attachments created by us remains vested in the
Nottingham University Hospitals NHS Trust.

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Nottingham University Hospitals NHS Trust
City Hospital campus | Hucknall Road | Nottingham | NG5 1PB | Tel: 0115 969 1169
QMC campus | Derby Road | Nottingham | NG7 2UH | Tel: 0115 924 9924

If you have received this email in error please notify the sender. 

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Tracking ID: dddc960f-b544-4532-98a9-97a1dd5ea509

Date and Time : Fri Jan 6 11:29:04 2023

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2. mailto:[Nottingham University Hospitals NHS Trust request email]

Dear Ed Fryer

 

I refer to your recent Freedom of Information request received on 5
January 2023.  Unfortunately we must advise you that there may be a slight
delay in supplying you a final response.

 

Please be assured that your request is still receiving our full attention
and we apologise for any inconvenience this possible delay may cause you

 

The reason for this delay is the need to obtain responses from several
divisions.

 

Kind Regards,

FOI Officer

Information Governance Team

[1][Nottingham University Hospitals NHS Trust request email]

 

The information contained in this email may be the subject of public disclosure under the
Freedom of Information Act 2000 - unless legally exempt from disclosure, the
confidentiality of this email and your reply cannot be guaranteed.

Copyright of this email and any attachments created by us remains vested in the
Nottingham University Hospitals NHS Trust.

This email and any files transmitted with it are confidential and intended solely for 
the use of the individual or entity to whom they are addressed. 

This footnote also confirms that this email message has been swept by 
anti-virus software for the presence of known computer viruses.

Nottingham University Hospitals NHS Trust
City Hospital campus | Hucknall Road | Nottingham | NG5 1PB | Tel: 0115 969 1169
QMC campus | Derby Road | Nottingham | NG7 2UH | Tel: 0115 924 9924

If you have received this email in error please notify the sender. 

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Tracking ID: 8dcf3911-604a-4c05-8337-eaed79571371

Date and Time : Fri Jan 27 11:22:40 2023

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1. mailto:[Nottingham University Hospitals NHS Trust request email]

1 Attachment

Dear Ed Fryer

 

I am writing in response to your correspondence dated [date] requesting
information under the Freedom of Information Act 2000.

 

Nottingham University Hospitals NHS Trust (NUH) came into being on 1st
April 2006 and assumed responsibility for the services provided by both
the Queen's Medical Centre (QMC) and Nottingham City Hospital NHS Trust
(NCH).

 

Your request for information has now been considered. The Trust's response
is provided in the attached document.

 

You are advised that this information is provided in accordance with the
Freedom of Information Act 2000 and is for your personal use.  Any re-use
of this information will be subject to copyright and the Re-Use of Public
Sector Information Regulations (18th July 2015).  In the event of any
re-use, the information must be reproduced accurately and not used in a
misleading manner.

 

If you have any queries or concerns then please contact me. Please
remember to quote the reference number above in any future communications.

 

If you are unhappy with the response you have received and wish to make an
appeal against our decision, you should write to

 

Head of Information Governance/Data Protection Officer

Nottingham University Hospitals NHS Trust

ICT Services, Heathfield House

City Campus

Hucknall Road

Nottingham NG5 1PB

Or by email [1][Nottingham University Hospitals NHS Trust request email]

 

If you are unhappy with the overall service you have received and wish to
discuss your concerns or obtain details on how to complain, please
contact:

 

Patient Advice & Liaison Service

Telephone 0800 183 0204

[2][email address]

 

If, after exhausting our internal process, you are still unhappy with the
information received, you may write to:

 

The Information Commissioner’s Office

Wycliffe House

Water Lane

Cheshire, SK9 5AF

Telephone: 0303 123 1113

[3]www.ico.gov.uk

 

Kind regards,

 

Information Governance Officer

Information Governance Team

[4][Nottingham University Hospitals NHS Trust request email]

 

 

The information contained in this email may be the subject of public disclosure under the
Freedom of Information Act 2000 - unless legally exempt from disclosure, the
confidentiality of this email and your reply cannot be guaranteed.

Copyright of this email and any attachments created by us remains vested in the
Nottingham University Hospitals NHS Trust.

This email and any files transmitted with it are confidential and intended solely for 
the use of the individual or entity to whom they are addressed. 

This footnote also confirms that this email message has been swept by 
anti-virus software for the presence of known computer viruses.

Nottingham University Hospitals NHS Trust
City Hospital campus | Hucknall Road | Nottingham | NG5 1PB | Tel: 0115 969 1169
QMC campus | Derby Road | Nottingham | NG7 2UH | Tel: 0115 924 9924

If you have received this email in error please notify the sender. 

--------------------------------------------------------------------------------

Tracking ID: fc52c7dd-e063-4997-ab5e-f23c73d928d1

Date and Time : Mon Feb 27 12:16:00 2023

References

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1. mailto:[Nottingham University Hospitals NHS Trust request email]
2. mailto:[email address]
3. http://www.ico.gov.uk/
4. mailto:[Nottingham University Hospitals NHS Trust request email]