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Link to the national network for rare diseases in UK, UKEGG

 

Health Care Provider Name: Leeds teaching Hospitals NHS Trust, UK

Contact Name: Kamron Khan, Consultant Ophthalmologist

 

 

 

 

 

Professional

Usual Rare Eye Diseases consultations

Patients with inherited eye disease have had their consultations deferred by 6 months at present.

Patients requiring active sight saving treatment are still being offered intervention (eg anti-VEGF therapy for macular neovascular disease associated with dystrophy)

Patients with rare inflammatory eye disease treated with immunosuppression are being reviewed, ideally with blood tests in the community (outside the HCP) and remote monitoring.

Picto Helpdesk

If closed, teleconsultations access

Yes – NHS England Attend Anywhere.

england.nhs.attendanywhere.com

Retinal

Intra-vitreal therapies (i.e.anti VEGF)

They continue, but with treatment planned less frequently (very rarely more less than 8 weekly), prioritising patients with nvAMD and iCRVO. Patients with DMO and BRVO are deferred by 3 months.

Teleconsultation

Eye emergencies link for RED complications

Yes, eye emergency treatment continues, staffed by senior doctors as junior staff have been redeployed to help other specialities (general medicine).

Genetics

Genetic testing for RED: maintained/discontinued

Discontinued temporarily, with prenatal genetic testing and cancer diagnoses prioritized instead.

Guidelines

specific COVID guidelines from your GOVERNMENT/ TOWN/ REGION

for poorly sighted patients (or disabled persons or persons with rare diseases)

england.nhs.uk/coronavirus

Guidelines

specific COVID guidelines from the PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients (or disabled persons or persons with rare diseases)

 

Link to the national network for rare diseases in UK, UKEGG

Macularsociety

Retina UK COVID-19 response

Guidelines

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients (or disabled persons or persons with rare diseases) and rare eye diseases

Resources for ophthalmologists

 

Clinical trials for RED:

  • inclusions ongoing/postponed

  • follow up visits: done on time/ delayed

  • Are patients under trial with COVID identified as having an adverse effect Yes/No

  • Industry cope? Yes/No

Trial activity is postponed for non-interventional studies. For interventional studies follow-up for safety is ongoing.

For trials delivering anti-VEGF therapy or similar that is sight saving these continue for now. COVID-19 testing is not currently taking place for asymptomatic trial patients.

Sponsors accept protocol deviations. Videoconsultations are allowed.

 


 

Health Care Provider Name: NLO, Nuffield Department of Clinical Neurosciences & Oxford Eye Hospital West Wing, John Radcliffe Hospital, Oxford

Contact Name: Pr Susan M Downes

 

 

 

 

 

Professional

Usual Rare Eye Diseases consultations

We have reduced clinic capacity in order to comply with social distancing measures, but we are still offering face-to-face appointments for patients with RED. Patients are required to wear protective masks and all staff wear the appropriate PPE.

Picto Helpdesk

If closed, teleconsultations access

 Where appropriate, consultations are being conducted by telephone and/ or via a video link.

Retinal

Intra-vitreal therapies (i.e.anti VEGF)

Treatment protocols for patients requiring regular intravitreal injections are being maintained. We have reduced the regular list to 16 injections per list (32 in a day),  but kept the other 9 slots per list free so that we can do injections on the day to save patients returning. 

Again, patients are required to wear protective masks and all staff wear the appropriate PPE.

Teleconsultation

Eye emergencies link for RED complications

The Eye Emergency Department (EED) is open for patients who require emergency care.  The lead EED consultant has extensive experience within the department and will refer patients on to the appropriate RED specialist for follow-up care, as required. All RED patients were sent letters with contact number and email so that if they felt they had any visual problem they could get into contact, which some have. Some RED have been reopened but with fewer patients as we have a policy in the Eye Hospital to reduce ‘footfall’ so that we have triaged all our referrals and follow ups to only see new REDs and those with new problems. We are seeing a third of our patients we usually see due to trying to keep social distancing and protecting vulnerable individuals. We are have just started the RED telephone consultations for our follow up patients  

Genetics

Genetic testing for RED: maintained/discontinued

The lab have prioritized COVID19 testing and samples for patients requiring urgent care. Blood samples for patients with RED are currently being stored at our Genomic Laboratory for testing at a later date. SD restarted RED clinic this week and the two new samples have been stored.
No buccal or saliva samples are being accepted, unless there are exceptional circumstances. The Oxford Microbiology lab is trying to sort out saliva decontamination procedures to enable this method.

Guidelines

specific COVID guidelines from your GOVERNMENT/ TOWN/ REGION

for poorly sighted patients (or disabled persons or persons with rare diseases)

The Oxfordshire Visual Impairment Team has not produced any specific regional Covid-19 guidelines for people living with a visual impairment, but they do have support services in place and respond directly to those in need of assistance.  
Guidelines

specific COVID guidelines from the PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients (or disabled persons or persons with rare diseases)

 We don’t have a single national  network, but there are a number of charities who support people with different eye diseases, for examples:

Fight for Sight

Macularsociety

Retina UK COVID-19 response

National Eye Research Centre

Royal National Institute of the Blind

Guidelines

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients (or disabled persons or persons with rare diseases) and rare eye diseases

Not specifically that I am aware of.

Patients are advised to follow the Governmental Guidelines. Our Centre is also advising people to wear spectacles rather than contact lenses during the pandemic.
Some UK based charitable organisations are offering advice and information:

RNIB

Sight advice

UK Retina

Macular Society

Clinical trials for RED:

  • inclusions ongoing/postponed

  • follow up visits: done on time/ delayed

  • Are patients under trial with COVID identified as having an adverse effect Yes/No

  • Industry cope? Yes/No

The Royal College of Ophthalmologists has published comprehensive information for clinicians. Their website also contains links to some information for patients.

The majority of our clinical research was temporarily halted from March to May. However, we were permitted to bring patients on-site, if they were participating in interventional trials and a face-to-face review was essential to maintaining their safety.
Follow-up visits for non-interventional trials were conducted by telephone.
We are now permitted to bring all existing research patients on-site for follow-up visits and will prioritise those whose visits are overdue.
Recruitment to some of our existing interventional studies has now been resumed, given we have approval from our Research and Development Department.
Industry temporarily halted new studies in set up in line with University and the Hospital guidelines, for other studies we had no issues/problems with industry.

 

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