Survey - Paediatricians Caring for Children with Rare Diseases: Survey of knowledge, practice and future educational needs.

What is the survey about?

This survey aims to describe the educational and resource needs of paediatricians looking after children with a rare disease and their families.

 “Rare diseases” are a disease or a condition which occurs infrequently (<1 in 2,000 children). Such diseases/conditions often include but are not limited to:

  • Rare genetics syndromes
  • Rare infectious diseases
  • Rare complications of more common diseases (e.g. rhabdomyolosis due to influenza).

Who can participate?

You would have received an email from the APSU. Your name would have been randomly chosen from the list of clinicians who participate in regular APSU surveillance. 

The survey is de-identified, and will include your APSU ID number only. This will be used only to track who has responded and to calculate a response rate.

Participation in this study is voluntary.  If you decide to complete and submit the survey, it is deemed that you have consented to participate.

You are free to withdraw from the study even after completing the survey – if you choose to withdraw we will identify your responses by the APSU ID number and destroy all the data that you have provided.

We need your responses even if you have never looked after children with rare diseases.

What will the results of this survey be used for?

The results from this survey will ultimately inform the development of educational tools and resources on rare diseases to address identified needs and preferences for content and mode of delivery.

The educational tools will be widely disseminated and made accessible to Paediatricians to assist them in more effectively caring for children with rare diseases, and their families.

For More Information:

If you have any queries or concerns while completing this survey, please do not hesitate to contact Arancha Gonzalez ( or 02 9845 0000) or Yvonne Zurynski ( or 02 9845 3005).

This project has been approved by Sydney Children’s Hospitals Network Human Research Ethics Committee.  If you have any concerns about the conduct of this study, please do not hesitate to contact the Executive Officer of the Ethics Committee (02 9845 3066) and quote approval number Approval No:  LNR/14/SCHN/496).

This is an arm of a multifaceted study on rare diseases, supported by the Australian Research Council (ARC) Linkage Project grant (LP 110200277) held by the Australian Paediatric Surveillance Unit (APSU) and entitled “Psychosocial and Economic Impacts of Rare Diseases on Australian Children, Families and Health Professionals”.

The Royal Australasian College of Physicians, Division of Paediatrics and Child Health is a partner in the APSU ARC Linkage Project Grant.

To express our thanks, once you have completed the survey, you will be entered in a draw to win one of 5 Myer gift cards, valued at $50 each.