A national ophthalmology research network for the retina
> Message from the Coordinator
Message from the Coordinator
The French Retinal Clinical Research network (FRCRnet) was created from a coordinated effort by four French ophthalmology departments, each with specific expertise in chronic retinal diseases.
It includes the clinical research and care units of the Quinze-Vingts Clinical Investigation Centre (CIC) 1423 and National Ophthalmology Hospital, the Strasbourg Hospital Centre for Rare Diseases, and the clinical departments of the Dijon Hospital and the Lariboisière Hospital. The network is organised according to four themes: diabetic retinopathy (Lariboisière), rare retinal diseases (Quinze-Vingts and Strasbourg), age-related macular degeneration (Dijon) and high-resolution imaging (Quinze-Vingts). The coordinators of each of these discussion groups have extensive experience in collaborative work, especially in multicentre clinical trials. The network's combined expertise is recognised internationally in areas such as preclinical research, medical care, genetics and gene therapy, clinical study design, high-resolution imaging and network management.
The FRCRnet network aims to enhance the international visibility of its components through innovative multicentre studies, in order to provide new pathophysiological knowledge, and validate new diagnostic or therapeutic methods and/or evidence-based medicine for new preventive and curative treatments for chronic retinal diseases, which is a rapidly evolving field of medicine.
Prof Michel PAQUES
Retinal research network
Ophthalmology is a discipline that is particularly susceptible to public health challenges and is at the forefront of developments in precision medicine. Indeed, the eye concentrates many different cell types in a small volume, and their interactions reflect the complexity of our interactions with the world. The mechanisms that cause chronic visual deficits (related to ageing, the genome, metabolism, inflammation, etc.) therefore require a multidisciplinary disease-management strategy. Age-related macular degeneration (AMD) is the most common cause of vision loss, and despite advances in the treatment of the wet form of AMD, many patients – particularly those with the dry form – have no therapeutic solution. Diabetic macular oedema is a growing cause of blindness. Retinal dystrophies are a constellation of genetically-determined diseases, most often untreatable, and frequently affecting very young patients.
With regard to treatment, therapeutic advances over the past ten years, such as anti-VEGF therapies, enable effective visual rehabilitation, but their cost requires a rigorous assessment of their clinical and societal benefits. The eye also has great potential as a marker of general health and for the validation of new treatments such as biotherapies. This is clearly illustrated by the examples of very high-resolution imaging and RPE65 gene therapy.
Over the years, French retina specialists have initiated cooperation within different networks (French Macula Federation (FFM), French-speaking Retina Specialists Club (CFSR), bringing together over a thousand retina specialists) that have become forums for exchanging ideas and a major source of regular medical information.
The FRCRnet network, the first ANR-accredited clinical research network in ophthalmology in France, is proposing to take part in this cooperation. It was founded in November 2017 under the coordination of Prof Michel Paques, assisted by Prof Catherine Creuzot-Garcher, and is mainly concerned with retinal diseases and related medical fields. The network, which intentionally limited its size in its initial configuration, includes 27 investigation centres and is organised around the following retinal diseases:
- Age-related macular degeneration
- Diabetic retinopathy
- Rare retinal diseases
- High-resolution imaging
FRCRnet was accredited by the French Clinical Research Infrastructure Network (F-CRIN) on September 1st, 2018.
Objectives of the FRCRnet network
The network aims to create a national web of clinical investigators in order to increase France's international visibility in the field of clinical research in ophthalmology.
- Develop a national collaborative organisation for retinal diseases and bring investigators together around shared scientific objectives
- Foster academic research in ophthalmology by initiating pioneering research projects
- Promote innovative projects and diagnostic tools
- Homogenise practices and train investigators
Ophthalmology expert group
An independent scientific committee is responsible for regularly assessing FRCRnet's activity and strategy.
It is made up of the following experts:
- Dr Jordi Monés, Barcelona(AMD)
- Dr Reiner O Schlingemann, Amsterdam (diabetic retinopathy)
- Dr Veronika Vaclavik, Lausanne (rare diseases)
- Dr Ethan Rossi, Pittsburgh (high-resolution imaging)
Age-related macular degeneration
AMD remains the leading cause of visual impairment in France after the age of 55 and one of the main healthcare expenditure items due to the cost of intravitreal injections of anti-VEGF. In the FRCRnet network, the AMD working group is closely involved in European epidemiological research networks, particularly those on ageing.
It currently has nine centres (Dijon, Bordeaux, Montpellier, Lyon, Créteil, Rouen, Grenoble, Paris - CIL, Rothschild Foundation and Toulouse). The AMD working group also maintains close ties with a network of clinicians who are also supported by the French-speaking Retina Specialists Club and the French Macula Federation.
Some of the French centres (Dijon, Créteil, Bordeaux) take part in European epidemiological studies as part of the E3 Consortium.
Like AMD, diabetic retinopathy is a major public health issue because it is one of the leading causes of blindness in young people and its worldwide incidence is increasing. For this reason, FRCRnet has formed a working group on diabetic retinopathy in close collaboration with diabetologists and ophthalmologists.
It currently has 14 centres (Dijon, Saint-Denis de La Réunion, Bordeaux, Strasbourg, Nantes, Pointe-à-Pitre, Besançon, Nice, Reims, Rouen, the Honoré Cave Clinic and Purpan Hospital in Toulouse, and the Lariboisière Hospital and Quinze-Vingts National Ophthalmology Hospital in Paris).
This working group will develop multicentre studies on the progression of retinopathy and the assessment of innovative treatments. An initial study will assess a new laser photocoagulation procedure for diabetic retinopathy with severe macular oedema.
Rare retinal diseases
This group is part of a network of specialists in rare retinal diseases that includes a clinical investigation centre (Quinze-Vingts National Ophthalmology Hospital), three rare-disease centres (Quinze-Vingts-Rothschild Foundation-Créteil, Montpellier and Strasbourg) and a genetic research centres at the Institut de la Vision in Paris and in Strasbourg. The participating centres have been involved in several national projects.
This working group is closely linked to SENSGENE, a network dedicated to improving the care and management of patients with inherited ophthalmic disorders (www.sensgene.com/). This network was set up in 2010 and includes more than 10 clinical and research centres in France. Its missions are divided into four main objectives: to guide patients and healthcare professionals, to develop effective clinical and molecular diagnostic strategies, to facilitate access to medical and social care, and to enable the implementation of new clinical trials and provide access to all patients in France.
The Rare Diseases working group also has close ties with the European Reference Network (www.sensgene.com/the-ern-eye-project).
High-resolution imaging: a cross-cutting, innovative diagnostic tool
High-resolution retinal imaging encompasses a range of optical technologies that allow observation of individual retinal cells, and as such provide essential cross-disciplinary expertise for diagnosing most diseases affecting the retina. Each member of this working group has at its disposal a camera allowing enhanced imaging using adaptive optics.
Nine centres in the FRCRnet network currently have this capability (Bordeaux, Besançon, Montpellier, Versailles, Caen, Grenoble, and the Quinze-Vingts National Ophthalmology Hospital, Lariboisière Hospital and the Pitié-Salpêtrière Hospital in Paris). The high-resolution imaging working group is the common foundation for all the network's ophthalmological expertise. Adaptive optics imaging is expected to be progressively integrated into most of the studies carried out by F-CRIN, further strengthening their scientific excellence; no other country in the world has such a network for high-resolution imaging.
This working group will also interact with the other F-CRIN components, particularly in the field of vascular and inflammatory diseases. Since 2014, three centres in the high-resolution imaging target group (Quinze-Vingts, Versailles and Salpêtrière) have been exploring subtle changes in retinal vessels in cardiovascular diseases. The high-resolution imaging group is cooperating closely with the PARIS Group and also working with other European centres for rare diseases (Fabry disease in Garches and Florence, amyloidosis in Kremlin-Bicêtre, pigmentary retinopathy in Tübingen).
For more information, visit our page on high-resolution imaging.
Strengths of the FRCRnet network
- A single point of contact, accessible to project sponsors, that centralises requests, budgets and procedures.
- A national network of investigation centres in metropolitan France, Guadeloupe, Martinique and Reunion Island.
- A network of excellence in clinical research in retinal diseases, guaranteeing harmonised practices and effective research teams that receive continuous training (GCP, assessment scales, etc.)
- Preferential access to Europe through F-CRIN and ECRIN. The European Clinical Research Infrastructure Network (ECRIN) is a non-profit organisation that facilitates the preparation and implementation of multinational clinical trials in Europe.
For each project, the network can do the following:
- Establish an expert board
- Contribute to the drafting of study documents
- Identify the investigation centres
- Help with the administrative and financial aspects
- Train research teams
- Take part in the operational coordination of the study
- Monitor recruitment
- Analyse the results
- Help with promotion (publications, patents)
The network's clinical investigation centres
The centres affiliated with the network sign a charter committing them to:
- Read all the information distributed by the FRCRnet coordinating office and actively respond to its requests
- Guarantee the excellence of the investigation centre
- Ensure that the local research teams are adequately trained and qualified
- Identify a network contact person at the centre to monitor ongoing trials and provide support for administrative and financial procedures
- Participate in the harmonisation of procedures with the other centres and monitor the network's procedures
In addition, the centres receive support from FRCRnet with:
- Initiating new research projects
- Gaining access to the training courses offered by the network
- Regular involvement in clinical trials that highlight their work
- Obtaining information on calls for projects in the field of retinal diseases
- Encouraging recruitment by sharing experiences with other centres in the network
- Assessing research costs in the context of multicentre research (harmonised grid between centres)
If you have any questions, please use the contact form.
Prof Michel Paques
Tel. +33 (0)1 40 02 14 30
Centre d'Investigations Cliniques 1423
CHNO des Quinze-Vingts & Institut de la Vision
28 rue de Charenton
75 012 Paris, France
Prof Catherine Creuzot-Garcher
Tel. +33 (0)3 80 29 51 73
CHU de Dijon,
14 Rue Paul Gaffarel,
21000 Dijon, France