Opportunities for collaborative research

Canadian ALSP Registry initiative was started after conducting literature searches on ALSP in Canada, and thus recognizing the underrepresentation of the Canadian ALSP patient population. We suspect that many Canadians with ALSP are either underdiagnosed or misdiagnosed.

The aim of this initiative will be to identify, review and characterize the clinical, radiological, and genetic profiles of Canadian subjects with ALSP. We aim to include subjects with either genetically confirmed or suspected ALSP. The secondary goals of this study will be to inform ALSP families about current or future studies and clinical trials, connect them to patient advocacy groups such as Sister’s Hope Foundation, and, ultimately, improve the rate of ALSP diagnosis by raising awareness within the Canadian clinical community.

If you are affected by ALSP and live in Canada, or if you know/follow someone who fulfils these criteria, please contact hanifa.hasan@mail.mcgill.ca or roberta.lapiana@mcgill.ca.