Research Study: Undiagnosed medical condition

You are invited to participate in a research study investigating the experiences of parents raising a child with an undiagnosed medical condition. This study aims to understand the unmet needs of parents with the goal of improving coping resources and support available to families in similar situations. Individuals who are 18 years or older and have at least one child with a medical condition that has remained undiagnosed for more than 2 years are invited to participate.

Participation involves the completion of an anonymous online survey which should take approximately 30 minutes to complete. This study is being conducted by a Masters of Genetic Counselling student from Griffith University, Brisbane Australia, and will be conducted in accordance with the National Statement on Ethical Conduct in Human Research.

Please pass this information on to anyone who might meet the criteria for study.The survey can be found at:

https://prodsurvey.rcs.griffith.edu.au/undiagnosed

If you have any questions please contact:

Linda Humphrey
Principle Supervisor
Associate Lecture
Griffith University
Ph: +61 7 3735 7564
Email: l.humphreys@griffith.edu.au

Tatiane Yanes
Principle student researcher
Masters of Genetic Counselling
Griffith University
Email: tatiane.yanes@griffithuni.edu.au

Edited by Tatiane122345 - 07 July 2013 at 4:51pm

Hi Susieq,

If you were never given an explanation for what caused your daughter's developmental delay then you are eligible to participate. We are keen to hear from as many parents as possible and with varying experiences so we have a good overview of the issues associated with not having a diagnosis.

Thanks
Tatiane

is it too late to do the study