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Invitation to participate in a study entitled “Ableism and Medical Error: The Experience of Young Women with Invisible Rare Diseases in Canada”

My name is Sarah Szumlanski and I am an undergraduate student in the Faculty of Arts and Social Sciences at Carleton University. I am working on a research project under the supervision of Professor Kelly Fritsch.

I am writing to you today to invite you to participate in a study entitled “Ableism and Medical Error: The Experience of Young Women with Invisible Rare Diseases in Canada”. This study aims to explore (1) how age, (dis)ability, diagnostic rareness, and gender intersect to impact the process of getting diagnosed with a rare disease; and (2), how the ableist attitudes of medical practitioners impede and potentially harm patients with rare diseases residing within Canada.

This study involves answering a series of 20 questions; 1 question to cover demographic information, 5 short answer questions, and 14 open-ended questions that allow participants to discuss their experiences in detail. This will be conducted fully through email. Once the study has been completed, your personal information and answers can be destroyed upon request.

To be eligible, you must identify as female, be 18-30 years of age, have been diagnosed with an invisible, rare, physical chronic illness/disability while within that age range, and be a Canadian resident.

While this project does involve discussing personal and potentially upsetting experiences, care will be taken to protect your identity and your wellbeing. This will be done by keeping all responses coded and allowing you to request that certain responses not be included in the final project. You may also choose not to answer any question that makes you uncomfortable.

You will have the right to end your participation in the study at any time, for any reason, up until August 1st, 2020. If you choose to withdraw, all the information you have provided will be destroyed upon request.

All research data, including emails, documents, and typed notes, will be password-protected. Any hard copies of data will be kept in a locked box. Research data will only be accessible by the researcher and the research supervisor. Any identifiable information will be kept in a separate password-protected file from de-identified data.

This research has been cleared by Carleton University Research Ethics Board A Clearance #112987

Should you have any ethical concerns with the study, please contact the REB Chair, Carleton University Research Ethics Board-A (by phone: 613-520-2600 ext. 2517 or by email: ethics@carleton.ca). For all other questions about the study, please contact the researcher.

If you would like to participate in this research project, or have any questions about the research, please contact me at SarahSzumlanski@cmail.carleton.ca

Sincerely,

Sarah Szumlanski