Urology Public Involvement Group

Regular Off Off

Do you suffer from urinary leaks, despite previous treatment?

We need women to be part of a new female Public Involvement Urology Group to help us to improve the care that we give to our patients. In particular, we are looking for women who experience recurring stress urinary incontinence (SUI). We are investigating the best way to treat this condition and we need your help to ensure we are putting patients at the centre of our research.

When is it?

The Project will take place over five year, and we are aiming to meet approximately twice a year over that time.

What will it involve?

  • Reading and feeding back on our new written patient information sheets, so that we can make sure they are easy to understand by the patients who are taking part in the research study.
  • Talking about the project in more detail with our research team.
  • Access to email would also be helpful.

Is there payment?

We will provide a £20 Love2Shop voucher as a thank you and to cover any out of pocket expenses.

Interested?

For further information, please contact:

Sharon Nolan sharon.nolan@nbt.nhs.uk (0117 414 933)
Communications and Patient & Public Involvement Manager

Take Part in Research

Patient & Doctor viewing an x-ray

Become one of the thousands of people taking part in research every day within the NHS.

About Research & Development

NBT Researcher

Find out more about our research and how we're working to improve patient care.

Contact Research

Research & Development
North Bristol NHS Trust
Level 3, Learning & Research building
Southmead Hospital
Westbury-on-Trym
Bristol, BS10 5NB

Telephone: 0117 4149330
Email: research@nbt.nhs.uk

R&I Urology.jpg

Whole Genome Sequencing Testing For Rare Disease

Regular Off Off

Is my patient eligible?

To review patient eligibility please Check the National Genomic Test Directory

All  current versions of the resources associated with the request process are curated on NHS England Genomic website under the Genomics Resources tab

For ease of navigation direct links are in blocks on below.

One page pathway guide for Rare Disease

R15 Primary Immunodeficiency Pre-Test Proforma

You can access the R15 Primary Immunodeficiency Pre-Test Proforma below:

Requesting reanalysis of existing data

For patients who have already had a WGS test under the National Genomic Test Directory (NGTD), reanalysis of a new gene panel or applying the latest version of the previous panel is only available where there is a change in clinical circumstances to justify the test.  This would include a significant change in the patient’s disorder, potential new treatment or clinical management applicable or a new pregnancy which might be impacted by testing.  There also needs to be a significant expectation that the re-analysis will provide a diagnosis which was not made by the original test.

For cases that satisfy those requirements, please complete the form below:

 and send to: SWGLHexports@nbt.nhs.uk 

Requesting a WGS test for Rare Disease

Sample image

NHS WGS test order form for rare disease:-

https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-test-order-forms/

For sample information and transport options please see: Sample Requirements and Transport

Complete the two forms below and send to mailto: SWGLHexports@nbt.nhs.uk

NHS Genomic Medicine Service record of discussion form

 

Additional Forms

Document image

All published forms can be found directly on the NHS Genomic Medicine Service Resources website.

For expediency we have directly linked to additional forms that may be required for specific circumstances in the conversation process:

NHS Genomic Medicine Service young persons' assent form

NHS Genomic Medicine Service genomic consultee declaration (adult requests only)

Below is the form for opt in and out to the National Genomic Research Library as part of the conversation process:

NHS Genomic Medicine Service participation in research form

 

Clinical Guides for Rare Disease

Biochemistry Clinical Guidelines

One page pathway guide for the request process for Whole Genome Sequencing in Rare Disease can be accessed in the drop down at the top of this page.

The HEE resource for guidance on elements of the consent conversation can be found here:

HEE GEP Guide to requesting WGS test - RD

 

Genomics Education Programme Resources

There are many excellent education packages to support your genomic learning journey at Genomics Educational Resources

For more targeted Genomics Education resources to support Whole Genome Sequencing test pathway 

Whole Genome Sequence request need advice?

Contact us - fingers on a telephone number pad

If you require further information regarding genomic testing please contact the laboratory

Tel:0117 4146168 or SWGLHexports@nbt.nhs.uk

If you require support for navigating the pathway including completion of paperwork please contact the Genomic Healthcare Practitioners

email rduh.swgenomicpractitioner@nhs.net

 

Intensive Care Public Involvement Group

Regular Off Off

We're seeking fresh perspectives for our Head Injuries Public Involvement Group within the Intensive Care Unit.

We want to hear from people who have had a head injury in the past, and their families or carers to be part of an ongoing Patient Involvement Group, discussing aspects of upcoming clinical research studies in Intensive Care. The studies will look at possible new treatments for patients with head injuries in Intensive Care.

How you can help

  • Assist us in how best to communicate our studies to the families of the patients involved
  • Give feedback on patient study information that will be provided to a patient’s family about taking part in a research study
  • Join in on Public Involvement Group meetings on an ad hoc basis. At present these are being held virtually.

To ensure that you are not out-of-pocket, we will provide a £25 Love2Shop voucher for each meeting, helping to cover your out of pocket expenses such as parking costs.

Getting Involved

If you would like to participate in this Patient Involvement Group, please contact:

Kati Hayes: kati.hayes@nbt.nhs.uk | 0117 41 49330 
Research Nurse (Working Hours: Mon 
– Fri, 8:30am – 16:30pm)

or

Dr Matt Thomas: matt.thomas@nbt.nhs.uk
ICU Clinical Research Lead

or

Sharon Nolan: sharon.nolan@nbt.nhs.uk
Research Communications and Patient & Public Involvement Manager

Take Part in Research

Patient & Doctor viewing an x-ray

Become one of the thousands of people taking part in research every day within the NHS.

About Research & Development

NBT Researcher

Find out more about our research and how we're working to improve patient care.

Contact Research

Research & Development
North Bristol NHS Trust
Level 3, Learning & Research building
Southmead Hospital
Westbury-on-Trym
Bristol, BS10 5NB

Telephone: 0117 4149330
Email: research@nbt.nhs.uk

R&I ICU.jpg