Archive for category: Dissemination

We feature several Related Projects on our website. ANIRIDIA.NET is the latest EU-funded project we feature. We caught up with Juliana Martínez-Atienza for a short interview to learn more about this COST Action.

My name is Juliana Martínez-Atienza, I am a pharmacist and work as a project manager for the Andalusian Network for Advanced Therapies, in Southern Spain. This job has provided me with the opportunity to design and coordinate clinical research projects in ocular surface disease, testing tissue engineering and cell therapy products.  In ANIRIDIA-NET I am the person responsible for science communication, and so I am responsible for dissemination and promotion of our Action’s network.

Can you please tell us a little bit about the COST Action ANIRIDIA-NET (https://aniridia-net.eu/)?

The main aim and objective of COST Action CA18116 ANIRIDIA: NETWORKING TO ADDRESS AN UNMET MEDICAL, SCIENTIFIC, AND SOCIETAL CHALLENGE (ANIRIDIA-NET) is to mobilize and characterize aniridia groups across Europe, share new scientific knowledge, technologies and platforms existing in different centres, and evaluate the applicability and translatability of new approaches for treating individuals with aniridia. Aniridia-net.eu is funded through COST (European Cooperation in Science and Technology), the longest-running European framework supporting trans-national cooperation among researchers, engineers and scholars across Europe. 

For those of us who are not too familiar, please describe aniridia.

Aniridia is a devastating ocular disease requiring intensive eye care, social and community support from birth and throughout an individual’s lifetime. A congenital genetic mutation causes an underdeveloped retina, cataract, glaucoma, and a progressive ocular surface disease of stem cell deficiency and loss of corneal transparency. Classified as a rare disease (ORPHA:77), aniridia is extremely challenging for the ophthalmologist, with very few effective treatments available. This stems from a lack of adequate-sized patient populations to conduct coordinated clinical and research activities, and a lack of information exchange in assessing and treating aniridia, with expertise typically limited to geographically-dispersed centres.

What are the goals of the project ANIRIDIA-NET?

There are three overarching goals. We aim to:

• Build a large, inclusive EU network of ophthalmologists, scientists, trainees, aniridia patient organizations, industry, and special interest groups to create linkages and a rich training ground for a new generation of trainees; 
• Improve aniridia management through evidence-based research, harmonized clinical protocols, pooling/sharing of samples and models, and consensus activities; and 
• Stimulate the development of novel diagnostics and treatments for aniridia based on innovative research in regenerative medicine/stem cells, investigational drugs, gene therapy, tissue engineering, transplantation, etc.

‘Aniridia is a rare disease, but it is complex and presents many challenges for doctors, scientists and patients alike. Its rarity means that only through communicating information and experiences, networking and collaboration, can we educate and develop better and more informed treatments for the aniridia community.’

ANIRIDIA-NET Coordinator Prof Neil Lagali, Linköping University

What does the project aim to achieve and how will this impact the field?

ANIRIDIA-NET aims to build the following capacities: 

1. A pan-European aniridia patient registry and clinical research network with a repository of clinical data and patient samples would propel research in aniridia by giving access to samples for research and access to patient cohorts for clinical studies, and will also enable better definition of the clinical course of the disease, better understanding of mechanisms leading to aniridia, and personalized medicine approaches based on individual variability according to genotype/phenotype. 
2. A centralized, high-throughput molecular genetic diagnostic platform providing quick mutational analysis to obtain fast and unambiguous information to guide treatment decisions, providing a basis for research into genotype-phenotype relationships. 
3. Stronger cooperation between experts, researchers, patients and practitioners will result in better and broader dissemination of expert knowledge and improve the standard of care of aniridia through consensus-based and evidence-based activities (e.g., standardized patient monitoring/examination and treatment/surgery protocols, guidelines for children, preclinical studies of new treatments, etc.). 
4. Through improved medical care and scientific breakthroughs, a better quality of life, stronger social inclusion and a higher socioeconomic capacity of persons affected by aniridia would enable them to better contribute to their communities.

How is this research related to VISICORT?

Thomas Ritter, a PI in VISICORT, is the Short Term Scientific Mission (STSM) Coordinator for ANIRIDIA-NET. STSMs are a key activity in COST actions, enabling the exchange of trainees between COST countries for education and capacity building.

Also, one of our working groups, led by Dr Davide Borroni from the University of Liverpool, is involved in networking activities that relate directly to VISICORT’s objectives. In fact, this group is working on activities aimed at improving transplantation, inflammation and immunity in aniridia-associated keratopathy. So, they will deliver publications or consensus protocols describing emerging surgical techniques, keratoprosthesis as well as new anti-inflammatory or inmunomodulatory therapeutic approaches to improve the ocular surface condition. 

Although a rare disease, aniridia is associated with ocular surface problems common to many ocular surface pathologies collectively affecting large populations. Greater collaboration and sharing of information and resources in the area of aniridia is therefore additionally expected to have significant benefits for the treatment of larger patient populations with ocular surface disease.

ANIRIDIA-NET is diverse, multidisciplinary network with a range of stakeholders, including clinicians, industrialists, basic science researchers, early-stage researchers and patients and patient advocacy groups. How will you ensure that they will communicate and interact? 

Researchers joining COST Actions are able to benefit from a wide range of COST networking tools. ANIRIDIA-NET holds regular management committee as well as working group meetings to coordinate and organise the Action’s scientific and networking activities. Our action also organizes Training Schools to share knowledge, provide support and collaboration to develop the Action’s goals.

Short Term Scientific Missions are exchange visits between researchers involved in the Action, allowing scientists to visit an institution or laboratory in another COST Member state. Their aim is to foster collaboration in excellent research infrastructures and share new techniques that may not be available in a participant’s home institution or laboratory. 

ANIRIDIA-NET also offers grants to attend international science and technology conference related to the Action’s goals.

Finally, our action also promotes the publication of scientific papers, press releases, talks and all sorts of dissemination documents to promote our network’s objectives and achievements.

Thank you very much!

This article/publication is based upon work from COST Action #CA18116, supported by COST (European Cooperation in Science and Technology). COST is a funding agency for research and innovation networks to help connect research initiatives across Europe and enable scientists to grow their ideas by sharing them with their peers (www.cost.eu).

Download ANIRIDIA.NET’s brochure here.