Pregnancy and Parenthood Working Group
Overview
The Pregnancy and Parenthood Working Group is made up of clinicians, researchers, and consumer representatives who bring clinical expertise in their respective fields, with a shared focus on pregnancy, parenthood, and kidney disease. Members contribute their knowledge and lived experience to help guide the direction of ANZDATA’s data collection and ensure it remains relevant and clinically meaningful.
The group plays a central role in maximising the scientific output of the registry by overseeing reporting, supporting research activities, and promoting collaboration both within the group and with external contributors. They provide recommendations to the ANZDATA Advisory Committee regarding the ongoing development of registry activities and outputs.
Key responsibilities of the working group include reviewing the scope of data collected, generating and facilitating research, producing relevant chapters for the Annual Report, and presenting findings at scientific meetings. Membership offers significant opportunities for involvement in ANZDATA’s activities, collaboration, and academic output, but also requires a strong commitment to active participation and contribution to the registry’s research and data processes.
Working Group Chair
Prof Shilpa Jesudason
Pregnancy and Parenthood Working Group Chair
Parenthood Data Collection Resources
The ANZDATA Registry Parenthood Dataset captures pregnancy and parenthood outcomes among women and men receiving kidney replacement therapy, including dialysis and kidney transplantation. Established in 1968 and expanded in recent years to include more detailed obstetric and clinical information, the dataset provides critical insights into maternal, paternal and neonatal outcomes in this high-risk population.
The dataset supports research, informs clinical counselling, and contributes to evidence-based reproductive healthcare for people living with kidney disease. Dialysis and transplantation can significantly affect fertility, conception, pregnancy and parenthood. While kidney transplantation may restore quality of life and improve fertility for many people of reproductive age, discussions about fertility, sexuality and parenthood remain uncommon in routine care. Studies suggest that around 80% of patients report never having discussed these topics with their healthcare team, which can contribute to the perception that parenthood may not be possible during dialysis or after transplantation. As an important international source of pregnancy and parenthood outcome data, the ANZDATA Registry relies on accurate and complete reporting from contributing renal units. However, reporting of pregnancy and parenthood outcomes has declined in recent years.
To support contributors and strengthen this important dataset, the ANZDATA Parenthood Working Group has developed a series of short educational videos that provide practical guidance on completing the Parenthood Data Collection Form and explain the importance of parenthood data reporting.
The Pregnancy and Parenthood Working Group is pleased to share the following video resources.
Introduction to ANZDATA Registry
Parenthood Data Collection
Introduction to Recording Paternal Parenthood Events in Dialysis and Transplant Recipients in ANZDATA Registry
Introduction to Recording Maternal Parenthood Events in Dialysis and Transplant Recipients in ANZDATA Registry
Introduction to Recording Hypertensive Disorders of Pregnancy
Data Collection
Parenthood data has been collected by ANZDATA since its inception in 1968, providing valuable insights into reproductive outcomes for individuals with kidney disease. In 2017, this data collection was broadened to include more detailed obstetric and clinical information. The expansion aimed to gain a deeper understanding of pregnancy-related outcomes, maternal and neonatal health, and the impact of kidney disease and its treatments on parenthood. By capturing this additional information, ANZDATA has strengthened its ability to inform clinical practice, guide patient counseling, and support ongoing research in reproductive health for people with kidney disease.
Parenthood Outcome Data Collection FormSubmit an Expression of Interest
To express your interest in joining this working group, please click the button below to submit a short cover letter and upload your resume.
Submit an EOI