Kidney Research UK

Background

Founded in 1961, Kidney Research UK (formerly the National Kidney Research Fund) is the largest funder of research into the prevention, treatment and management of kidney disease. Every year we allocate around 75% of our total charitable income to research funding, awarding around 20 new grants every year.

We are committed to understanding the causes of, and treatments for, kidney disease, and to making life better for the millions of patients suffering from it. Our mission is therefore to fund life-saving research into kidney disease, but in so doing, to ensure that it is conducted responsibly and to the highest standards. One such area of research is the study of genetics and its link to kidney disease.

Genetic Research

There is compelling evidence that inheritance has a major effect on the development of kidney disease either from a parent passing on an abnormal gene to a child or because certain genes confer risks of more complex disorders.

Recognising the important link between inheritance and the incidence of kidney disease, we have been working with the Medical Research Council and Wellcome Trust to create a collection of DNA from patients with kidney diseases. We now have hundreds of samples from patients with glomerulonephritis (inflammation of the kidney filters) and vesicoureteric reflux (which can cause kidney failure in children).

It is hoped that these samples will be used to develop genetic testing for these, and associated, conditions, which, in time, will lead to improvements in the treatment and management of patients suffering from them.

Renal Genetics Group

We recently unveiled a new development in our efforts to encourage greater research into inheritance and renal disease. In April 2005, the Renal Genetics Group was launched at a conference of the Renal Association and British Transplantation Society. A joint initiative with the Renal Association, the Group will include stakeholders from across the renal and genetics fields and was set up to help direct, facilitate and ensure good practice in renal genetic research.

It will also work to increase funding for genetic research, introduce state-of-the-art genetic analysis, and encourage international collaboration.

Through this exciting initiative, we hope to enable more precisely targeted treatments for kidney disease to be developed and to greatly improve diagnosis of the disease through genetic techniques.

The Use of Patient Data for Genetic Research

In supporting genetic research that involves the use of patient data and DNA, we support the view of the AMRC and GMC that such research must be only carried out in full accordance with legislation on patient consent and confidentiality. Consent to the use of human tissue samples is covered by the Human Tissue Act 2004; research involving data that can identify patients must comply with the Health and Social Care Act 2001, the Data Protection Act 1998 and the Human Rights Act 1998.

Patient data can include medical records, tissue and blood samples, medical test results and birth and death records. Where this kind of data is required for research, it cannot be obtained without the informed consent of the patient. This means that, in seeking consent, it is important to ensure that the patient has sufficient understanding of the data that will be used, what it is to be used for and how the results of the research might impact upon them.

Moreover, we would only support research proposals that have given full consideration to issues of patient confidentiality, including using anonymised data where possible, seeking the patient's consent when the disclosure of any data is required and keeping disclosures to the minimum necessary. All research involving this patient data must also be approved by a research ethics committee.

Kidney Research UK

April 2007