The PNH Research Tissue Bank V1
Research type
Research Tissue Bank
IRAS ID
105641
Contact name
Claire McKinley
Contact email
Research summary
The Paroxysmal Nocturnal Haemoglobinuria (PNH) Research Tissue Bank (RTB)
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
16/YH/0290
Date of REC Opinion
5 Aug 2016
REC opinion
Favourable Opinion
Data collection arrangements
Patients over the age of 16 attending PNH and aplastic anaemia clinics run by the Leeds centre of the National PNH Service may be approached by a member of the clinical team to ask if they would like to participate in the PNH RTB. An information sheet will be provided and the process will be fully explained by a trained member of staff. If a patient provides consent, samples for the RTB will be collected at the same time as routine clinical samples and may include: blood, mouth swabs and urine. Excess diagnostic tissue may also be incorporated into the RTB. Patients may be asked to contribute further samples when they attend follow up appointments.
Healthy volunteer donors will be recruited from the University of Leeds and invited to provide samples after giving informed written consent.
Tissue samples will be stored in secure laboratory and dedicated cold storage areas in a University building at St James's Hospital in Leeds. Data will be stored on a secure database. Both data and tissue will be stored in a coded format so that they remain anonymous (linked anonymised).
Research programme
The primary objective of the PNH RTB is to create a collection of tissue samples and data from patients with PNH and related disorders, in order to support researchers conducting studies into these areas with the aim to improve understanding and treatment of these rare diseases. In order to fully understand the disease process, normal controls are also studied. Access to samples and linked anonymised data will be provided to researchers within Leeds and to external researchers. Applications for material will be reviewed by the PNH RTB Committee, who will determine whether the proposed research has scientific merit, complies with the terms of consent and ethical approval and whether the requested samples are available.
Storage license
12352
RTBTitle
The Paroxysmal Nocturnal Haemoglobinuria (PNH) Research Tissue Bank (RTB)
Establishment organisation
The University of Leeds
Establishment organisation address
Leeds Institute of Medical Research
Wellcome Trust Brenner Building, St James's Hospital
Beckett Street, Leeds
LS9 7TF