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Research

Thinking about participating in a medical research project?

Alopecia Victoria supports research into Alopecia Areata and other forms of hair loss, and can assist other organisations to obtain information on related medical and psychological issues.

Better understanding and improved treatments for many medical conditions depend on generous individuals donating their time, personal information and gifting their body tissues (eg blood) and products (eg. urine) to support research.

In the past, members have volunteered to participate in research projects, by giving blood or information to researchers in the hope of contributing to medical advances, and in turn, AASA has been the recipient of generous support from its medical advisors.

At its best the relationship between medical researchers and volunteers can enrich lives on both sides of the encounter (1). For volunteers, it can lead to a better understanding both of their condition and the role of research in potentially improving their life. For researchers, it can be more than just an encounter with body tissues and autoimmune processes, it can also be an illumination of the lived experience of people with the condition.

The volunteer can be an active contributor to this relationship by being well informed. The researchers in any project are obliged to provide you with a summary of the study in plain language which enables you to understand it. This means you can give informed consent to participate.

In addition - always ask questions if something is not clear to you, a good researcher welcomes this. For example, if you are donating scalp tissue, will you be able to wear your wig comfortably after the procedure?

1. Arthur W Frank 'The Renewal of Generosity. Illness, Medicine and How to Live' University of Chicago Press, 2004

There is more excellent information about participating in one form of clinical research, a clinical trial, here on the ABC website
or download a pdf file of the Australian National Health and Medical Research Council’s “Questions to Ask”

Questions for clinical trial participants to ask.
UPDATED: 12th June 2017

Most Importantly –
Which institutions's ethics committee has approved this study?

Why is this aim of the study?
 
What is involved in the study?

What are the benefits to me of being in the study?

What are the risks to me of being in the study?

Will there be any cost to me? (eg. travel, dressings, discomfort, inconvenience or pain)

Will you reimburse any financial costs to me of being in the study?

Will the study pay for any doctor visits (eg. Removal of stitches after a biopsy) as a result of the study?

Will the study pay for the treatment of any health problems I might experience as a result of participating in this research?

Will my tissue/information be used in any other study or stored in a data base?

Will my tissue/information be shared as part of an international study group?

How is the study being funded?

How will you protect my privacy?

How will you tell me about the study results?

Read more about consumers and clinical research

https://www.australianclinicaltrials.gov.au/consumers