People with albinism wanted for survey

5 Mar 2008

A University of Queensland researcher is seeking volunteers with albinism to complete a survey that will provide the first snapshot of the disease in Australia. 

Helene Johanson, a PhD student at UQ's Institute for Molecular Bioscience, hopes to clarify the levels of albinism in Australia, for which there are no published statistics. 

“Researchers are currently using statistics collected in the United States approximately a decade ago,” Ms Johanson said. 

“The United States has a very different population demographic when compared to Australia and the South Pacific. 

“This survey should allow us to identify how many adults and children in Australia are affected by this disease, with the findings aiding public health planners, researchers and managers. 

“The survey is completely dependent on volunteers, and we would be very grateful for the help in generating accurate statistics.” 

The survey is part of Ms Johanson's wider PhD project, which focuses on identifying the genetic cause of albinism in individuals from Australia and the South Pacific region. 

Albinism is a rare genetic condition where individuals cannot produce the pigment melanin, or can only produce it at very low levels. 

Melanin is the pigment responsible for eye, hair and skin colour, so those with the condition often have very light colouring in these features. 

They also suffer from eye problems, including poor vision, a condition called nystagmus which produces rapid involuntary movements of the eye, and strabismus, which occurs when sufferers cannot align their eyes simultaneously. 

Information collected during the survey will be completely confidential. The survey was cleared by the Human Ethics Committee of The University of Queensland in accordance with National Health and Medical Research Council guidelines. 

Media Contacts: 
Helene Johanson – 

Bronwyn Adams (IMB Communications) – 07 3346 2134 or 0418 575 247