Biobank to boost rare disease study

A blood and tissue bank is to be set up to accelerate medical research into rare disorders.

The so-called biobank, modelled on successful versions overseas, will store frozen clinical samples from people with rare medical conditions.

The idea came from the New Zealand Organisation for Rare Disorders, an umbrella lobby for 90 separate support groups, and was embraced by leading Otago University medical researchers at the lobby group's conference in Wellington.

Rare Disorders Organisation executive director John Forman said the bank would cost about $150,000 to establish and he hoped to have it running within a year.

He was confident enough money could be raised from fundraising and grant applications.

The bank would be formed as a charitable trust under his organisation's oversight but he hoped a university or medical school would agree to run it.

Mr Forman, who has two children with a rare condition caused by an enzyme deficiency, said a panel of scientists and laypeople would approve applications from medical researchers to use samples stored in the bank.

Otago University geneticist Stephen Robertson told the conference the planned bank was a "wise and prescient" move.

Otago University biomedical research scientist Mike Eccles also praised the bank project.

Another project setting up a central bank of samples from animals with rare disorders similar to human conditions would also yield benefits.

Combined, the two initiatives would shift the emphasis of research from establishing the causes of rare diseases to understanding how they could be treated.

- NZPA