PhD student and principal researcher, Helene Johanson [Institute for Molecular Bioscience, University of QLD] is conducting a survey that aims to find the numbers of people who have albinism in Australia.
Albinism is a rare genetic condition that is divided into two categories, Ocular albinism (OA) and Oculocutaneous albinism (OCA). A key characteristic of both forms of albinism are ocular changes resulting in poor vision, nystagmus & possibly strabismus. Individuals with albinism often fall within the 'legally blind' visual range. Oculocutaneous albinism is characterised by the ocular features combined with lightened colouration of the hair, skin & iridies of the eye, when compared to others of the same ancestral background.
There has not been such a survey conducted in this region of the World. Information collected will be used to generate incidence statistics that will allow current and future predictions of numbers of individuals with albinism, based on population statistics. Our population demographics are very different from other Countries, it will be interesting to see if numbers of individuals who have albinism in Australia are truly comparable to say, America [1 in 17 000] for example.
Research of this nature is important in generating statistical data that helps to shape an efficient public health & education system that can accommodate for adult and childhood blindness in Australia caused by albinism.
We have Human Ethics Approval to continue with such a survey granted through the University of QLD Medical Ethics Committee, as part of the wider PhD research project "Study of Inheritance of Albinism in the South Pacific & Australia".
Yes, all answers are completely confidential and will only be viewed by the principal researcher. Participants can be assured that the survey is secure and their responses are not available to non-authorised individuals. The principal researcher will only report the data in non-identified numerical form.
Personal data will initially be collected from participants in 'semi de-identified form' over a 6 month period. This data will be securely stored in password protected computer files until the survey closes. This is not designed to allow the complete identification of individuals who participate. It will be used during the data collation phase to ensure there is non-duplication of data collected. The original data will then be converted to non-identified numerical form and the original information will be permanently destroyed.
Participation in this survey is voluntary. It is preferred if the person who responds to the questionnaire either has albinism or, is the legal guardian of a person who has albinism. Participation from individuals living in 'All the States of Australia' is encouraged. Members of RANZCO are also acceptable.
It is estimated that this survey will take 5 - 10 minutes to complete.