Biobanks: Research allies. A new episode of Rare Horizons.
One of the greatest challenges in rare disease research is the limited availability of biological samples. We all know that studies based on small sample sizes often yield less conclusive results than those conducted with larger datasets. Fortunately, we have treasured allies to help overcome this issue: biobanks.
On this new episode, we spoke to Sara Casati, a practical bioethicist working at Common Service ELSI of BBMRI ERIC, the European research infrastructure of biobanking, who explains what biobanking is, how samples are collected and stored, and what types of data are gathered in biobanks. We also present biobanks as a hub for collaboration among patients, families, and researchers. For that purpose, we talked to Mackenzie Abramson, Senior Manager of Research Program Communications at Global Genes and Rare-X, who is personally affected by Ehlers-Danlos Syndrome. Serena Bernacchi, a mother whose child passed away from gliomatosis cerebri, encourages other parents to consider donating their children's samples to biobanks. Finally, Dr Andrés Morales, a Paediatric Neuro-Oncologist and the Chief Medical Officer at SJD Pediatric Cancer Center Barcelona, delves into the SJD Barcelona Children’s Hospital Biobank, which contains one of the largest collections of paediatric tumour samples.
You can now listen to this episode on Spotify, Apple podcast and iVoox.
Rare Horizons is an initiative by Share4Rare and the Weber Foundation. Follow our channels to stay updated on new episodes.
