Invitation to Participate in Research Study for Canadian Patients and Families with Lysosomal Storage Diseases (LSDs) 

This study is part of the PhD Program at the Carleton University

Study Title:
Access to Orphan Drugs in Canada: Integrating Patient and Policy Perspectives (Study #110105).


Dear patients and families with Lysosomal Storage Diseases (LSDs):

We are conducting interviews as part of a research study to increase our understanding of the lived experiences of patients and families with LSDs with the management of their disease and navigation of health systems in Canada.


As a Canadian patient/family carer living with LSD and older than 16 years of age, you are in an ideal position to give us valuable information from your own perspective.

The interview takes around 60 minutes and will be conducted in-person or by phone (using skype, facetime, or any other means that suits you best). Your responses to the questions will be kept confidential. Each interview will be assigned a number code to help ensure that personal identifiers are not revealed during the analysis and write up of findings.

There will be a small greeting gift ($15 gift card) as a compensation for participating in this study.

Objective of the study:

Your participation will be valuable component to our research and findings to support establishing a patient-focused orphan drug review approach which may improve the life and health of millions of Canadian patients affected with rare diseases by engaging them in the decision-making processes and ensuring consistency, transparency, and timely access to treatment (which is critical for patients with rare diseases).

If you are willing to participate, please suggest a day and time that suits you and connect with me by email at or phone/text (613) 2950622.


Finally, if you would like to raise any concerns or have questions on the interview and overall research processes, please contact me and/or my supervisor.

Interviewer/Researcher Name: Nahya Awada

Affiliation: PhD Candidate, School of Public Policy and Administration, Carleton University


Phone: +1(613)2950622

Supervisor name: Paul Peters

Affiliation: Associate Professor, Department of Health Sciences, Carleton University


Phone: (613) 520-2600. Ext. 2134