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 Update: 08.06.2020

 

 

 

 

 

 

 

Link to the national reference network for rare eye diseases SENSGENE in France

 

Updates from :

 


 

Health Care Provider Name: Réseau CARGO, Hôpitaux Universitaires de Strasbourg, France.

Contact Name: Hélène Dollfus, Head of department-Professor.

 

 

 

 

Professional

Usual Rare Eye Diseases

consultations

Planc blanc. Only emergencies and consultations that cannot be postponed (pregnancies, tumours,…) are maintained. 

Picto Helpdesk

If closed, teleconsultations

access

Yes, if the clinic can be done by phone (genetic results , genetic counseling, psychological support,…) 

Contact :

By phone :

  • +33 (0) 3.88.11.67.53 

By e-mail:

Retinal

Intra-vitreal therapies

(i.e.anti VEGF)

These are done by the ophthalmology department of the Hôpitaux Universitaires de Strasbourg with a minimal protocol.

Contact : Dr David Gaucher, +33 3 69 55 02 70

Teleconsultation

Eye emergencies link for

RED complications

Yes emergencies are done by the ophthalmology department of the Hôpitaux Universitaires de Strasbourg with a minimal protocol

Contact : Urgences ophtalmologiques, + 33 3 69 55 04 35

Genetics

Genetic testing for RED:

maintained/discontinued

Yes, only urgent cases are done (pregnancies mainly), the national sequencing platforms are closed.

Guidelines

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

Information from Ministery of Health:

Site du Ministère de la Santé

Information for people with disabilities:

Espace handicap COVID-19

Guidelines

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

French Federation of blind people:

Fédération des Aveugles de France

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

Link to the French society of ophthalmology

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 novel inclusions are stopped and postponed.

Follow up visits are delayed unless important medical followup is warranted or incase of adverse event .

We works closely with industry . We have national recommendation for clinical studies

ANSM website

 

 

 


 

Health Care Provider Name: Réseau OPHTARA, Hôpital Necker, Paris, France.

Contact Name: Pr Dominique Brémond-Gignac, coordinator.

 

 

 

 

Professional

Usual Rare Eye Diseases

consultations

Yes.

Picto Helpdesk

If closed, teleconsultations

access

 Yes if needed.

Teleconsultation

Eye emergencies link for

RED complications

Specific email.

Genetics

Genetic testing for RED:

maintained/discontinued

Yes, degraded mode.
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)

See SENSGENE website and the websites of associations : Ouvrir les yeux and  Association du syndrome de Wolfram have collected data/guidelines for their pathologies

Link to the national reference network for rare eye diseases SENSGENE in France

 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

 

 

Link to the French society of ophthalmology

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

 
  • Postponed
  • Followup done for very few/ Delayed
  • No COVID identified patient in a trial 
  • Industries sent a lot of recommendations

 


 

Health Care Provider Name: Réseau OPHTARA, Hôpital Cochin, Paris, France.

Contact Name: Pr Antoine Brézin, coordinator.

 

 

 

 

Professional

Usual Rare Eye Diseases

consultations

Yes.

Picto Helpdesk

If closed, teleconsultations

access

 Yes if needed.

Teleconsultation

Eye emergencies link for

RED complications

+ 33 1 58 41 22 01

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)

See SENSGENE website and the websites of associations : Ouvrir les yeux and  Association du syndrome de Wolfram have collected data/guidelines for their pathologies

Link to the national reference network for rare eye diseases SENSGENE in France

 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

 

 

Link to the French society of ophthalmology

 


 

Health Care Provider Name: Réseau OPHTARA, Hôpital La Pitié-Salpêtrière, Paris, France.

Contact Name: Pr Bahram Bodaghi, coordinator.

 

 

 

 

Professional

Usual Rare Eye Diseases

consultations

Yes.

Picto Helpdesk

If closed, teleconsultations

access

 Yes if needed.

Teleconsultation

Eye emergencies link for

RED complications

+ 33 1 42 16 32 01

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)

See SENSGENE website and the websites of associations : Ouvrir les yeux and  Association du syndrome de Wolfram have collected data/guidelines for their pathologies

Link to the national reference network for rare eye diseases SENSGENE in France

 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

 

 

Link to the French society of ophthalmology

 


 

Health Care Provider Name: Réseau OPHTARA, Hôpital Européen Georges Pompidou, Paris, France.

Contact Name: Dr Christophe Orssaud.

 

 

 

 

Professional

Usual Rare Eye Diseases

consultations

It is possible to have consultation.

Picto Helpdesk

If closed, teleconsultations

access

 Yes.

Retinal

Intra-vitreal therapies

(i.e.anti VEGF)

Not performed at HEGP usually.

Teleconsultation

Eye emergencies link for

RED complications

christophe.orssaud@aphp.fr

Genetics

Genetic testing for RED:

maintained/discontinued

We take blood samples for genetic research.

But the analysis could be delayed.

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)

See SENSGENE website and the websites of associations : Ouvrir les yeux and  Association du syndrome de Wolfram have collected data/guidelines for their pathologies

Link to the national reference network for rare eye diseases SENSGENE in France

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

 

Link to the French society of ophthalmology

 

 

 


 

Health Care Provider Name: Réseau REFERET, CHNO des Quinze-Vingts, Paris, France.

Contact Name: Dr Saddek Mohand-Said, Medical Coordinator, HCP representative.

 

 

 

 

Professional

Usual Rare Eye Diseases

consultations

Maintained.

Picto Helpdesk

If closed, teleconsultations

access

 Tel: +33 1 40 02 14 30


Email: cic@15-20.fr

Retinal

Intra-vitreal therapies

(i.e.anti VEGF)

 Tel: +33 1 40 02 14 30


Email: cic@15-20.fr

Teleconsultation

Eye emergencies link for

RED complications

 Tel: +33 1 40 02 14 30


Email: cic@15-20.fr

Genetics

Genetic testing for RED:

maintained/discontinued

Email: cic@15-20.fr

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)

See Retina France website:

Link to Retina France

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

 

Link to the French society of ophthalmology

 

 

 


 

Health Care Provider Name: Réseau CNRK, Reference National Center for Keratoconus

Contact Name: Pr Pierre Fournié, CRNK and HCP coordinator 

 

 

 

 

Professional

Usual Rare Eye Diseases

consultations

Maintained.

Picto Helpdesk

If closed, teleconsultations

access

NA

Retinal

Intra-vitreal therapies

(i.e.anti VEGF)

Maintained but NA for CRNK

Teleconsultation

Eye emergencies link for

RED complications

+ 33 5 61 77 23 44

keratocone@chu-toulouse.fr

Genetics

Genetic testing for RED:

maintained/discontinued

No.

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)

See SENSGENE website:

Link to SENSGENE

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

 

Link to the French society of ophthalmology

 

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

Clinical trials are ongoing

keratocone@chu-toulouse.fr

 

 

Link to the website of the Ministery of Health in France

 

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