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Empty pipettes in an EB lab.

Knowledge exchange & partnership

Partnering with industry

One of EB-ResNet’s main goals is to build bridges between patient advocacy groups, academic and clinical researchers and the biopharma and health technology industries to drive research outcomes into patient benefit.

To bridge the gap between fundamental research and clinical trials we need partners with expertise and experience. Several decades of research support by EB-ResNet members has effectively created resources that significantly de-risk future partner research & development investment.

EB-ResNet as clinical-translation partner provides:

  • In-depth knowledge of biology and clinical features of all types of EB
  • Global network of EB clinicians
  • Direct involvement and dialogue with EB patients
  • Disease natural history and clinical endpoints
  • Clinician access to patients and clinical trials
  • Partnering co-funding

A strong foundation for collaborative programs

Research into the causes and consequences of EB started around 40 years ago, largely as a result of the patient organization DEBRA UK supporting the first research projects in the early 1980s. This support created much of the basic knowledge of EB, at a time when there was little interest in a rare, relatively unknown condition, leading to early diagnostics, and the beginning of a dedicated EB research community.

The scale of research has expanded, with project budgets of only EUR 10s of thousands in the 1980’s to EUR 1million +, having led to investment by the research-active national DEBRAs among the 55+ members of DEBRA International of >€60million to date. More recently, other patient organizations have also started to support EB research and its clinical translation.

The breadth and depth of established knowledge of EB biology, together with networks of clinical excellence such as EB-CLINET, national and international patient databases (i.e. ERN), documentation of disease natural history (i.e. PEBLES), and development of disease markers and validation of clinical endpoints, provide a strong foundation for collaborative programs to bring therapies to the clinic.

EB-ResNet encourages dialogue with companies considering development of clinical trials to ensure protocols address constraints on patient enrolment. Within the past decade, diverse technologies aiming at curative therapies addressing the underlying genetic defects for all EB types, as well as symptom-relief treatments have progressed from laboratory to early-stage clinical trials.

Experience to date has shown that some companies do not consider the impact of disease on patient participation in clinical trials in sufficient depth, or early enough. This has, in some cases, led to non-compliance or patients withdrawing from trials, with consequent failure of trials.

Industry Partnering Panel - IPP

EB-ResNet has set up an Industry Partnering Panel (IPP) to help industry address these and other pre-competitive issues in EB R&D.

A first meeting of the IPP was held at EB2017, and several hurdles to be overcome were identified, notably:

  • access to patients and clinician time;
  • a better understanding of the complexity of EB as a group of distinct conditions with diverse etiology; and
  • the difficulty of correlating clinically relevant endpoints with regulatory requirements.

Proposals for a collaborative approach to address these key pre-competitive issues are now in development. Interested to join? Let us know.

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