What Will Happen
Queensland Renal Genetics Clinic
What will Happen
Prior to your appointment, one of our genetic counsellors will call you to obtain information about your personal and family medical history. They will also answer any questions you have about the referral (PDF, 32KB) or appointment and determine what your main concerns and expectations are.
We will usually enquire about your first degree (children, siblings and parents) and second degree (grandchildren, nieces, nephews, aunts, uncles and grandparents) relatives. This generally includes:
- dates of birth
- dates and cause of death
- general health
- ages of diagnoses
- details about relevant medical conditions and diagnoses
- details on where and when people were investigated or treated
We might ask you to pass on a consent form to certain relatives to request permission to access their relevant medical records. We will not contact your relatives directly without permission and the information provided to us is confidential. We understand that, for various reasons, you may not be able to answer some or all of our questions.
At your appointment, you will be seen by a clinical geneticist, nephrologist (paediatric and/or adult), and in some cases a genetic counsellor. The consultation time is up to one hour in duration. You are welcome to bring a family member or friend along for support.
The majority of time is spent clarifying/determining your diagnosis, providing you with information on the medical management along with genetic counselling, and discussing your concerns. We encourage you to ask questions, so you may wish to write these down beforehand. Depending on the reason for referral, a doctor may want to perform a physical examination.
An additional 30 minutes at the end of the appointment may be required if any investigations (e.g. blood tests) need to be ordered. It may also be necessary for the nephrologist to order additional kidney investigations. It is not always possible to obtain a diagnosis.
After your appointment, both you and your doctors will receive a written letter about what was discussed during the consultation, including any recommendations made. Follow-up appointments are arranged as required.