22Q11 deletion syndrome, VCFS, DiGeorge Syndrome and IVF Pre-implantation Genetic Diagnosis

The request was partially successful.

Dear Guy’s and St Thomas’ NHS Foundation Trust,

I would be grateful under the Freedom of Information Act 2000, I would be grateful for the following information about IVF Pre-Implantation Genetic Diagnosis how many cycles since 2000 have been undertaken:

1. For 22q11.2 deletion syndrome and its associated names of DiGeorge syndrome/Velo-Cardio-Facial Syndrome and all the historical names associated with 22q11.2 deletion syndrome including CATCH22.

2. What particular process was followed before the licence was granted by the HFEA.

3. Was the evidence base peer reviewed and I would be grateful if you could send me the requisite information.

4. What processes were followed prior to the patient being offered a cycle and whether any background health investigations such as a full blood count, calcium, vitamin D, cardiac monitoring taken place before IVF PGD.

5. When was this licence granted for 22q11.2 deletion syndrome IVF PGD?

6. How many live births have taken place under 22q11.2 deletion syndrome IVF PGD.

7. What are the statistical chances quoted of having a successful cycle with 22q11.2 deletion syndrome and please could you provide me with a information leaflet stating these success rates.

8. Could you please tell me how many patients regardless of 22q11.2 deletion syndrome have been admitted to the Hughes Syndrome Unit during and after a cycle of IVF.

I look forward to receiving this information within 20 working days.

Yours faithfully,

Fiona Woollard

Dear Guy’s and St Thomas’ NHS Foundation Trust,

Could you please send an acknowledgement to this address as I have not received an acknowledgement.

Many thanks.

Yours faithfully,

Fiona Woollard

Sewell Catherine, Guy’s and St Thomas’ NHS Foundation Trust

1 Attachment

Dear Ms Woollard,

Please see the acknowledgement sent on Tuesday 26th July. If you have any questions please do not hesitate to contact me suing the below details

Kind regards

Catherine Sewell
Access to Information Manager
Information Governance
Guy's and St Thomas' NHS Foundation Trust
0207 188 7188 ext: 54666
07918 338954
@[email address]

P please consider the environment - do you really need to print this email

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Dear Catherine Sewell

I would be grateful for a response to this request.

Yours sincerely,

Fiona Woollard

Aning-Amoah Peace, Guy’s and St Thomas’ NHS Foundation Trust

Dear Ms Woollard,

A final response was sent to the email address provided on 15th September 2016 at 13:38. I have resent it again this morning at 10:11.

Please confirm that you have received the response.

Kind regards

Ms Peace Aning-Amoah
Deputy Information Governance Manager
 
Information Governance and Management Directorate
First Floor, South Wing (near Chapel),
St Thomas' Hospital
Westminster Bridge Road, London SE1 7EH
 
T: 0207 188 7525 (ext 54766) |M: 07774 739 044
E: [email address]|[email address]

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Aning-Amoah Peace, Guy’s and St Thomas’ NHS Foundation Trust

1 Attachment

Dear Mrs Woollard,

 

Thank you for your request for information under the Freedom of
Information Act 2000.  Please find attached as a PDF document, our
response to your request.

 

Yours sincerely,

 

 

Freedom of Information Team

Guy’s & St Thomas’ NHS Foundation Trust

[1][Guy’s and St Thomas’ NHS Foundation Trust request email]

 

 

From: Aning-Amoah Peace
Sent: 15 September 2016 13:38
To: '[email address]'
Cc: :FOI
Subject: Final Response - FOI 56690

 

Dear Ms Woolard,

 

Thank you for your request for information under the Freedom of
Information Act 2000.  Please find attached as a PDF document, our
response to your request.

 

Please also accept our sincere apologies for the delay.

 

Yours sincerely,

 

 

Freedom of Information Team

Guy’s & St Thomas’ NHS Foundation Trust

[2][Guy’s and St Thomas’ NHS Foundation Trust request email]

 

 

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References

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1. mailto:[Guy’s and St Thomas’ NHS Foundation Trust request email]
2. mailto:[Guy’s and St Thomas’ NHS Foundation Trust request email]

Fiona Woollard left an annotation ()

To all those who are considering IVF Pre-implantation Genetic Diagnosis at Guy's Hospital for screening out 22q11.2 deletion syndrome which all the genetic specialists to future generations, please note that there is NO licence with the HFEA. As such it is an illegal procedure.

Neither are people with 22q11.2 deletion syndrome 'carriers', you either have the deletion or do not nor is it 50:50 as quoted by the specialists, it is entirely complicated because of the issues of platelets and bleeding and clotting factors. I have previously had extensive haematology testing on the issue of platelets after all of this and understand this and would not have contemplated this at all or any further children as passing a gene on to future generations which gives rise to serious illness and disabilities which is life-long however varied and have also lost a child to 22q11.2 deletion syndrome aged 8 and made difficult decisions in relation to another severely affected foetus who would not have survived.

There is no evidence that this procedure works in 22q11 deletion syndrome/VCFS/DiGeorge syndrome indeed I had serious adverse events due to the drugs used due to the endocrine status of which I did not know, I was affected. Nor are any tests done prior to any procedure just assume you are healthy, it needs to be approached with considerable caution and CCGs also need to be aware there is no evidence that it works. I would have not considered this procedure had I known it wasn't registered or licensed or the drugs concerned gave rise to miscarriage and Hughes syndrome.

This procedure nearly killed me and I would consider myself to be an expert patient on the issue of 22q11.2 deletion syndrome.

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