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EB researcher discussing in a lab.

EB-ResNet research strategy

Translating successful research for patient benefit

Dedicated to helping people with EB.

EB-ResNet’s mission focuses on supporting and promoting EB research, and working in partnership with like-minded organisations and individuals to drive research outcomes into clinical application for patient benefit. The ultimate goal of the strategy is to ensure that research will benefit the estimated 500,000 to 1 million people living with EB worldwide. The network is resourced through its member organisations and partners.

EB-ResNet’s strategic aims are determined primarily by the unmet needs of patients, identified by both clinicians and people living with EB. The feasibility of addressing these unmet needs through research, and the likelihood of being able to translate research outputs into affordable treatments, also guide prioritisation of the support for particular research areas.

Strategic aims

The three key aims of EB-ResNet’s strategy are to: 

  1. Support research to develop effective and safe treatments
  2. Develop partnerships to expand research
  3. Drive clinical translation and adoption of treatments internationally

1 Prioritizing patient-centred research

EB-ResNet supports world-class research, worldwide, to increase understanding of the causes and consequences of Epidermolysis Bullosa, and to develop the evidence base for the development of better clinical care, diagnostics, and disease-modifying therapies for those with EB. Support for research will focus on four priority areas:

  • Improving understanding of EB biology to create new concepts for diagnosis and treatment
  • Developing disease-modifying and curative therapies
  • Preventing and curing severe disease consequences: chronic wounds, fibrosis and cancer
  • Improving clinical care and symptom relief through research

2 Working in partnership

EB-ResNet’s strategy for the period 2020-2024 acknowledges the previous decade of development and reduction-to-practice of diverse therapy technologies relevant to EB, the rapid expansion of translational research and clinical trials, and growing interest and engagement of the biopharma and health tech sectors in EB.

To build on these developments over the next 5 years, EB-ResNet will continue to prioritise and highlight unmet clinical needs and opportunities to stakeholders, including other organisations supporting EB research, and potential partners in the industry. It will continue its support of fundamental research that leads to a better understanding of the causes and consequences of EB, thus allowing identification of novel and better therapeutic targets and concepts. EB-ResNet’s support for early-stage research aims to de-risk investment by industry partners in later preclinical research and clinical trials of patient-prioritised treatments.

 

3 Driving clinical translation and adoption of treatments

EB-ResNet will also build a portfolio of activities framed around exploiting the knowledge, know-how and intellectual property derived from successful research outcomes, and their translation into clinical applications. EB-ResNet will advocate on behalf of patients and work with industry partners and other stakeholders, regulators and healthcare commissioners and providers to promote adoption and delivery of effective, affordable treatments.

 

Status of current therapy approaches for EB

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