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Update: 15.06.2020

 

Updates from :

 


 

Health Care Provider Name: Bambino Gesù Children’s Hospital, Rome, Italy.

Contact Name: Luca Buzzonetti MD, Head of Ophthalomogy Department.

 

 Professional

Usual Rare Eye Diseases

consultations

All HCP consultations are closed.

 Picto Helpdesk

If closed, teleconsultations

access

psp.oculistica@opbg.net

 Retinal

Intra-vitreal therapies

(i.e.anti VEGF)

No.

 Teleconsultation

Eye emergencies link for

RED complications

Eye emergencies are continued but there is not a specific link for patient for rare eye diseases complications.

 Genetics

Genetic testing for RED:

maintained/discontinued

 

Maintained.
 Guidelines

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

No.

 Guidelines

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

 

No.
 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

No.
 

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

All clinical trials are postponed.

 


 

Health Care Provider Name: Azienda Ospedaliera Università della Campania “Luigi Vanvitelli”, Napoli, Italy

Contact Name: Francesca Simonelli, Professor and Chief of Ophthalmology.

 

 Professional

Usual Rare Eye Diseases

consultations

The consultations are maintained opened but reduced.

 Picto Helpdesk

If closed, teleconsultations

access

 

We are also supporting the patients with psychological and visual rehabilitation consultations on skype.

The patients can contact the doctors

at the following e-mail: 

malattieocularirare@policliniconapoli.it

 Retinal

Intra-vitreal therapies

(i.e.anti VEGF)

Maintained.

 Teleconsultation

Eye emergencies link for

RED complications

The patients can contact the doctors

at the following e-mail: 

malattieocularirare@policliniconapoli.it

 Genetics

Genetic testing for RED:

maintained/discontinued

 

Maintained.
 Guidelines

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

The Campania Region suggested to maintain opened the consultations for patients with rare diseases.

 Guidelines

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

 

Retina Italia Onlus - Associazione per la lotta alle Distrofie retiniche

 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

www.sedesoi.com

 

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 clinical trials are continuing
  • We have delayed some follow-up visits according to the patients and sponsor
  • The industry is coping with us

 


 

Health Care Provider Name: Center for Retinitis Pigmentosa of Veneto Region - Civil Hospital of Camposampiero - Azienda ULSS 6 Euganea of Padova, Italy

Contact Name: Pr Francesco Parmeggiani (MD, HCP Representative)

 

 Professional

Usual Rare Eye Diseases

consultations

They are re-started from 13 May 2020 (of course with a quite reduced number of patients for the new COVID-related visiting modalities).

 Picto Helpdesk

If closed, teleconsultations

access

 

Although consultations are re-started, RED teleconsultations are still possible by phone (0039 49 9324536 just on Thursday morning from 9 to 12) and/or by e-mail

centrorp.veneto@gmail.com

see also internet links

Centro Specializzato per la Retinite Pigmentosa della Regione Veneto

Retina Italia Onlus - I nostri centri

Page of the centre on the ORPHANET website 

 Retinal

Intra-vitreal therapies

(i.e.anti VEGF)

They are always maintained and, from 11 May 2020, they are more frequent in comparison with lockdown period, even if with a quite reduced number of patients for the new COVIDrelated visiting modalities) (telephone 0039 (0039 49 9324538) - see also internet link:

Oculistica Di Ospedale Di Camposampiero

 Teleconsultation

Eye emergencies link for

RED complications

Eye emergencies are continued but, as usually happened, there is no specific link for patient for rare eye diseases - see also internet link:

Oculistica Di Ospedale Di Camposampiero

 Genetics

Genetic testing for RED:

maintained/discontinued

Genetic tests are still discontinued, even if they shuold be restarted from 31 July 2020 – see also internet link:

Geni e malattie

 Guidelines

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

Therapeutic plans for patients with rare diseases are automatically renewed by the Rare Diseases Register of the Veneto Region.

 Guidelines

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

No.

 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

Some recommendations have been inserted in the web site of the Italian Society of Ophthalmology (SOI) – see www.sedesoi.com
 

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 inclusions are postponed.
  • The follow-up visits are allowed.
  • No patients under trial have hitherto identified as COVID+
    individuals.

 

 


 

Health Care Provider Name: University Hospital of Padova, Italy

Contact Name: Elisabetta Pilotto, MD (HCP representative for ERN-EYE)

 

 Professional

Usual Rare Eye Diseases

consultations

HCP consultations are opened.

 Picto Helpdesk

If closed, teleconsultations

access

 
 Retinal

Intra-vitreal therapies

(i.e.anti VEGF)

Maintained.

 Teleconsultation

Eye emergencies link for

RED complications

Continued every day

For children:

ipovisione.pediatrica@aopd.veneto.it

 Genetics

Genetic testing for RED:

maintained/discontinued

 

Maintained.
 Guidelines

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

Therapeutic plan for rare diseases of the Malattie Rare ‘s register automatically renewed.

 Guidelines

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

malattierare.regione.veneto.it

 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

www.sedesoi.com

 

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

 

 

Link to the website of the Ministery of Health in Italy

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