Join a Research Study Data Base — ASN Events

Join a Research Study Data Base (#251)

Kate Christian 1 , Elle McGlynn 1 , Freddy Sitas 1
  1. Cancer Council NSW, Woolloomooloo, NSW, Australia

The Join a Research Study (JRS) database provides potential participants for research studies at Cancer Council NSW (CCNSW) and other research institutions which are conducting ethically approved studies relating to cancer. Questionnaire information provided by the participant allows the JRS team to assess eligibility for those studies, and to pass appropriate contact details on to researchers so they can approach the participant directly.

JRS participants are recruited via the CCNSW website, or by completion of a purpose designed, coded postcard returned by mail. The code allows tracking of recruitment avenues. Postcard responses are followed up by mail; web recruitment collects complete consent and questionnaire.

Participants are recruited from diverse avenues including CCNSW events, regional activities, routine mail outs, newsletters, social media and the internet.

Information required for determining participant eligibility for a study is collected via the Application Form, as is the nature of contact data required. A Data Transfer Agreement satisfies other requirements.

2,125 participants have been recruited to the database since 2009, 1,536 women, and 589 men. 1,004 people have had cancer, 996 people are family members of people who have had cancer. Median age is 57, ages range from18 to 96.
507 people have been eligible for the CLEAR Study, a CCNSW flagship study. JRS participants have been involved in six other cancer studies external to CCNSW.

JRS provides a cost effective recruitment mechanism for research studies which do not require participants to be randomly recruited or representative of a particular population. It is particularly effective for pilot studies, focus groups, web recruitment and studies which involve members of the general public.

JRS is also a very effective tool for engaging the community, as it offers people an opportunity to volunteer or give to CCNSW in a way that does not involve money.