What information will be collected in the registry?

Prospective data will be collected for all enrolled patients at diagnosis, at the end of completed treatment and then annually.

The following details will be collected on the Australasian Oncofertility Registry (AOFR):

  • Demographic characteristics – Medicare number, age, gender, ethnicity, marital status, insurance status, education, language spoken at home; residential postcode, cancer hospital treating centre, cancer hospital treating centre postcode, treating fertility centre and treating fertility centre postcode.
  • Cancer diagnosis and treatment details [date of diagnosis, type of cancer and stage, date of relapse (if relevant), type of treatment (chemotherapy, radiotherapy, surgery and Bone Marrow Therapy)], total dose of chemotherapy and/or field and total dose of radiotherapy and/or field.
  • Data about previous/current gynaecological and obstetric history, contraception use, menstral history.
  • Fertility preservation strategies (type of strategy, number of attempts, amount collected, complications, quality of gonadal tissue).
  • Reproductive health following cancer treatment.
  • Family planning after cancer treatment (information on natural and assited pregnancies and complications during pregnancy).