The simple objective of the UK National EHE Biobank is to continue to collect all biospecimens that may become available from the treatment and care programmes of EHE patients in the UK, and to make sure that these are captured for future research. Biospecimens will include tissue from biopsies, resections and transplants; longitudinal blood samples; plural effusion samples; and possible autopsy samples.
Progress has been very good. A total of 39 patients have enrolled in the biobank with the following samples now captured:
- 27 patient blood samples
- 24 biopsy samples; and
- 3 live tissue samples
This is excellent progress, but as Hugh Leonard explained, capturing and storing the samples is of little value if they are not used for research. Hugh went on:
“Access for researchers is now critical, as we have potentially meaningful biobank samples captured. Access however has to be very tightly controlled, both under the ethics approval granted for the biobank before it even started, and under the relevant UK legislation relating to human tissue use. We will therefore be meeting in April with Professor Robin Jones, Principle Investigator for the biobank, Dr Paul Huang and Ms Eniola Ayeni the Biobank Tissue Manager (in the photo above) to agree the structure, composition and members of the Access Committee.”