Thiruchelvam, Kaeshaelya http://orcid.org/0000-0002-3754-1690
Byles, Julie http://orcid.org/0000-0002-3984-6877
Hasan, Syed Shahzad http://orcid.org/0000-0002-4058-2215
Egan, Nicholas http://orcid.org/0000-0002-0854-7444
Kairuz, Therese http://orcid.org/0000-0002-3311-187X
Article History
Received: 19 March 2021
Accepted: 31 May 2021
First Online: 6 June 2021
Conflicts of interests
: The authors declare no conflicts of interest.
: For the ALSWH survey data, all participants consented to joining the study and are free to withdraw or suspend their participation at any time with no need to provide a reason. For the linked data (PBS), ALSWH participants who decline health record linkage are excluded from linked data requests. Over 80 percent of all ALSWH participants have explicitly consented to record linkage. Since 2005, the responsible Human Research Ethics Committees have approved opt-out consent; in addition, a waiver applies to unconsented participants who were deceased or lost to follow up before 2005.