My Studies is the research platform of RareConnect. My Studies provides researchers with tools to help them gather patient-reported, current, and longitudinal health information to better understand the clinical features, course, and progression of rare diseases.
If you are a researcher and are interested in the use of My Studies, please contact firstname.lastname@example.org for a consultation to determine appropriateness.
After consultation, if you are interested in the use of the platform, you will be provided with governance documents and consent materials and receive support in order to complete your ethics application. You will also create a My Studies researcher profile. Accounts will only be provided to researchers who register with their institutional email address. Accounts without appropriate affiliations will be deactivated.
Once you’ve received local ethics approvals, you will be required to submit a formal My Studies application form. There are three forms and you will be required to select the appropriate form
How to determine which application is the correct one:
You have a cohort of patients that you’d like to collect data on and you are submitting a survey to send to participants for data collection. If your study is a multi-site study, you are the lead site. You must indicate in your application form if there are sub-sites to your studySub-site Researcher
You have a cohort of patients that you’d like to collect data from but are part of a larger study as a sub-site. The lead site has already submitted an application indicating there will be sub-sites. As a sub-site, you will still be required to submit your local ethics approval.Controlled-Access Request
You are a third Party Researcher wishing to request access to controlled-access. This will ensure that the requested data is associated with datasets that have the appropriate secondary-use permissions in place.