None listed
Conditions
Brief summary
This study will establish the first web-based, multi-site Australasian Oncofertility Registry (AOFR) collecting data from cancer and fertility specialists. This study is for cancer patients who are diagnosed with cancer who are aged under 45 years old. Who is it for? You may be eligible to join this study if you are aged 13 years or above and have been diagnosed with cancer or aged 0-12 years diagnosed with cancer who have been referred for fertility preservation only. Study Details This study will collect data regarding uptake and utilisation of fertility preservation, future use and complications of assisted reproductive technologies as well as the potential for infertility following treatment for cancer survivors will be collected. Patients will be asked to consent to the research team collecting the results of fertility tests following cancer treatment. In males (semen analysis and fertility hormone blood tests in years 1,3,5). In females fertility hormone blood tests and ultrasound scans looking at the number of follicles in the ovaries. The research study will be undertaken under five broad and interlinked themes. These themes include: Themes 1: Awareness and referral for fertility preservation Theme 2: Strategies, uptake, complications and quality of fertility preservation in cancer patients Theme 3: Reproductive health following cancer treatment Theme 4: Family planning and use of assisted reproductive technologies with pregnancy and birth outcomes The data from the registry and patient Medicare records will be used to perform a cost modeling health economics study for theme. Patients who consent to being part of the AOFR study wil be asked to supply data at diagnosis, end of treatment and then annually for 20 years. Eligible patients or their parents/guardians/carers on behalf of the patient no longer being treated for their cancer at their cancer centre will be contacted retrospectively (2 years retrospectively from diagnosis) by the International FUTuRE Fertility Research Manager to explain the study and to determine whether eligible patients or parent/guardian/carer on behalf of their child would be interested in having their/their child's details stored on the registry. If a patient or parent/carer/guardian on behalf of the patient, is interested in having their/their child's Medical records reviewed in order to ascertain personal, cancer and fertility history then an information pack will be sent out to the patient/patient's family. The information pack will include study information details and patient consent forms.
Interventions
This project will establish the first web-based, multi-site Australasian Oncofertility Registry (AOFR) collecting data from cancer and fertility specialists. Outcomes generated from the study will provide meaningful translational data regarding uptake and utilisation of fertility preservation, future use and complications of assisted reproductive technologies as well as the potential for infertility following treatment for cancer survivors. The data from the registry and patient Medicare records
This project will establish the first web-based, multi-site Australasian Oncofertility Registry (AOFR) collecting data from cancer and fertility specialists. Outcomes generated from the study will provide meaningful translational data regarding uptake and utilisation of fertility preservation, future use and complications of assisted reproductive technologies as well as the potential for infertility following treatment for cancer survivors. The data from the registry and patient Medicare records will be used to perform a cost modeling health economics study. The research study will be undertaken under five broad and interlinked themes. These themes include: Themes 1: Awareness and referral for fertility preservation Theme 2: Strategies, uptake, complications and quality of fertility preservation in cancer patients Theme 3: Reproductive health following cancer treatment Theme 4: Family planning and use of assisted reproductive technologies with pregnancy and birth outcomes Theme 5: Health service utilisation and cost of fertility preservation programs for cancer patients in Australasia Patients will be followed for a 20 year period to ensure that data on theme 3 and 4 can be captured. Cancer survivors patients will be asked to consent to the research team collecting follow up data on patients fertility potential. For male patients this includes blood tests and semen analysis in year 1, 3 and 5 after cancer treatment. For female patients this includes blood tests and an ultrasound scan looking at follicle count annually. Cancer patients that will be enrolled retrospectively from the previous two years - calendar years 2014-2016. Patient Medical Records will be accessed to undertake a retrospective review of eligible patient demographics, cancer details, treatment protocol, blood tests and scan results.
Sponsors
University of New South Wales
Eligibility
Sex/Gender
All
Age
No minimum to 45 Years
Healthy volunteers
No
Inclusion criteria
Update Registry patient inclusion criteria a. All patients (any cancer diagnosis) diagnosed with cancer b. Cancer patients aged 13-45 who diagnosed with cancer c. Cancer patients aged 0-12 years of age who are referred for fertility preservation only. Those paediatric patients who are not referred for FP will not be eligible. d. All retrospective patients within two years from diagnosis
Exclusion criteria
Registry patient exclusion criteria a. Non-cancer patients who are treated with gonadotoxic drugs will not be registered in phase 1. b. Parents/siblings who undergo fertility preservation for a child/sibling. c. Patients who do not consent to data being collected and reported. d. Patients whose first language is not English when we cannot get an appropriate interpreter to provide consent for the study. e. Patients who do not consent or assent to the registry f. Patients who do not have cancer g. Patients who are not of child bearing age
Outcome results
None listed