Cure EB Family Forum – losartan in RDEB

It was wonderful to have Prof Dimitra Kiritsi, Professor of Dermatology at the Aristotle University of Thessaloniki at our Family Forum online last month.

As part of her interesting and informative talk, Dimitra outlined the reasons researchers decided to trial losartan in RDEB children and outlined the REFLECT study protocol.

The REFLECT study was a phase I/II clinical trial in 29 children (27 of which received the full treatment protocol) with RDEB, aged between 3 and 14 years. The study showed that losartan was well tolerated in children with RDEB, with no significant side effects, as well as providing initial evidence of clinical benefit in RDEB. While this was a non-randomised, single arm trial (i.e. all children received losartan), primarily aimed at establishing safety and tolerability, the team are working on putting together a larger, multi-centre, multi-country trial placebo-controlled trail to establish efficacy in EB.

Family Forum members had the opportunity to ask questions and in the discussion we learned that losartan appears to be effective in reducing inflammation – the effects are more pronounced in younger children compared with older children. It may have a role in combination therapy, for example, by reducing inflammation it may enhance the efficacy of a gene therapy treatment.

Huge thanks to Dimitra for joining our Family Forum!

If you or a family member have EB, join our Family Forum. And let us know what topics you would like us to cover at future meetings!