A clinical practice guideline on Sickle Cell is being developed for use in the NHS in England, Wales and Northern Ireland. Registered stakeholders for this guideline are invited to comment on the provisional recommendations via this website. 

Individuals and organisations not registered as stakeholders are not able to comment, we recommend that you register as a stakeholder or you contact the registered stakeholder organisation that most closely represents your interests and pass your comments to them.

An embargoed version of the final guideline will be available to stakeholder organisations that comment during this consultation. This embargoed version will be released two weeks before the official publication, and will be subject to the signing of a confidentiality form. The confidentiality form, for signing, will be sent to all commenting stakeholders.

Note that the provisional recommendations presented here do not constitute the Institute's formal guidance on this topic. The recommendations are provisional and may change after consultation.

Consultation dates: 08/02/12 - 07/03/12

Consultation documents

• Full guideline
• Appendices
• Comments proforma

Points to consider in the consultation

Full version

• Points or areas that are not covered, but which appear to fall within the scope of the guideline
• Potential inconsistencies or any disagreement with the Guideline Development Groups interpretation of the evidence
• The practical value of the provisional recommendations.

NICE version

Issues of style and format; for example, stakeholders may feel that the information could be made more readable and easy to follow.

General

Do you think this guidance could be changed to better promote equality of opportunity relating to age, disability, gender, gender identity, ethnicity, religion and belief, sexual orientation or socio-economic status?

In answering this question, please include details of:

• Which particular parts of the guidance you think affect equality of opportunity.
• Why and how you think equality of opportunity is affected.

Economic modelling

The Developers have produced an economic model(s) in support of this guideline which is available for stakeholders on request. Stakeholders must make requests for a copy of the model in writing and agree to and sign a confidentiality agreement. If you wish to access an executable model for this guideline please contact palida.teelucknavan@nice.org.uk  for further information.

How to submit your comments

Please provide all responses to the draft guideline documents using the comments proforma (ensuring all relevant fields are completed, including your organisation’s full name) and forward this electronically by 5pm on 7 March 2012 at the very latest to this email address:  SickleCell@nice.org.uk 

The Institute is unable to accept

• Comments from non-registered organisations - if you wish your comments to be considered please register via the NICE website
• Comments from individuals - please contact the registered stakeholder organisation that most closely represents your interests and pass your comments to them.
• Comments received after the consultation deadline (5pm)
• Comments that are not on the correct proforma
• More than one response per stakeholder organisation
• Confidential information or other material that you would not wish to be made public
• Personal medical information about yourself or another person from which your or the person’s identity could be ascertained.

What will happen to your comments

• All eligible comments  will be sent to the developers at the end of the consultation
• Comments from registered stakeholders and nominated expert reviewers ONLY will be formally responded to by the developers and posted on the NICE website at the time of the pre-publication check.
• No action will be taken upon receipt of personal, individual comments, comments from non-registered organisations  and late comments.
• PLEASE NOTE: The Institute reserves the right to summarise and edit comments received during consultations, or not to publish them at all, where in the reasonable opinion of the Institute, the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate.

Acknowledgement of comments

You should receive an automated acknowledgement from the email box when you email your comments.  If you do not receive this acknowledgement, please contact the relevant Guidelines Coordinator to ensure your comments have been safely received.

Comments received in the course or consultations carried out by the Institute are published in the interests of openness and transparency, and to promote understanding of how recommendations are developed. The comments are published as a record of the submissions that the Institute has received, and are not endorsed by the Institute, its officers or advisory committees.

Anticipated publication date: 27 June 2012

Further information

• More information on NICE’s guideline development process