The NIHR BioResource – Rare diseases has been established to identify genetic causes of rare diseases. Upon further consent from patients/their parents, DNA from SRNS samples will be shared with the BioResource. This will allow whole genome sequencing using next generation sequencing techniques. Results are accessible to the NephroS study team and any mutations found will be confirmed. Reports will be sent out to the Nephrologist to discuss with the patient.
Consent forms and Information leaflets for the BioResource can be found below. If you are interested in taking part as either a site or as a participant please contact Melanie.Dillon@RenalRegistry.nhs.uk
- BioResource Consent Forms
- BioResource Information Leaflets
Please note: all of the information sheets and consent forms are generic and should be printed out on each trust’s headed paper before use.
Written by the Nephrotic Syndrome Rare Disease Group