University of Minnesota Fungal Study Consent Video

hello and welcome from our team at the University of Minnesota in the MOSI study group I'm Dr Matthew Pullen the lead investigator and clinician on this project based here at the University of Minnesota we are eager to introduce you to our study and to have you on board as we answer some of the burning questions doctors and patients have about treating fungal infections in this video we'll give you an overview of what participating in this study means for you and how we are handling and protecting your data into other details in this study we're looking for people who have been diagnosed with specific fungal infections including histoplasmosis blastomycosis and covid Odom micosis these infections are becoming more common across the United States while we do have medications to treat them with there are still unanswered questions about the effectiveness of those medications the cost of treatment and the types of side effects people have while taking these drugs that's where you come in if you agree to participate in our study we'll ask you to fill out an enrollment survey that asks you about how you were diagnosed with this infection what symptoms you've had any treatments you've received or are currently taking for the infection and how your symptoms have improved or worsened while being treated we will also ask you some basic information about where you live recent travel destinations and other Medical conditions that you may have that contribute to developing a fungal infection like diabetes imuno compromising conditions COPD tuberculosis or HIV this information will help us understand the different risks that can increase a person's chance for developing one of these fungal infections this initial survey should take about 15 to 20 minutes to complete after completing the first survey you'll be automatically emailed invitations once per month for short follow-up surveys each taking about 5 to 10 minutes these are focused on seeing how your symptoms change while you continue your treatment as well as finding out if you've had to change your medications due to side effects cost or ineffectiveness none of our surveys will ask you any questions about CLE cell diagnosis or treatment genetic history mental health or drug and alcohol use treatment you'll receive these follow-up email surveys for one year now let's talk about your data and how we will use it unlike a clinical trial this study doesn't provide medications or change your treatment plan instead we're asking you to provide us with the data about your health and treatment so we can better understand the challenges that people face after being diagnosed with the fungal infection anytime someone is sharing their personal data privacy is a concern we take protecting your data very seriously our surveys are stored in a secure servers housed and managed by the University of Minnesota we follow all University and federal guidelines for medical data security and strictly control which members of our team have access to the database the only time your data may be shared during our study would be in collaboration with our network of researchers at partner universities and with regulatory officials from the University of Minnesota or CDC this sharing is to make the most efficient and effective use of your data and to ensure data integrity and security when we use your data to answer questions within our study we will first remove any identifying information that could connect you to your data this is a standard method protesting protecting participant privacy similarly anytime results from the study are used in future Publications or for future studies with other colleagues or collaborators identifying information will be removed from any data used you may not you will you may not receive notification or a separate consent form about future studies that use these data while the study is ongoing our team will host annual openhouse style meetings for participants and other stakeholders this will be a great chance for you to ask questions about the study itself and the progress we're making as well as raising concerns once our study is complete in late 2029 all participants will receive an email containing a summary of study findings as well as copies of any Publications resulting from the study our study does not involve asking you to take a different medication or alter your treatment in any way so we cannot promise any medical benefits by participating this study also does not offer financial compensation the main benefit of this project would be your contribution to our understanding of fungal infections which could help future patients receive more effective treatment the primary risk ass associated with participating in this study is related to data privacy though we take protecting your data very seriously and the risk of data exposure is low any program that collects and stores data is at risk of a breach should this occur we will let all participants know and will provide information about what data may have been exposed if at any time you wish to withdraw from participating in the study all you have to do is email us at fle study at.edu with your request along with your name and date of birth withd drawing from the study has no impact on your medical treatment in any way we will make sure you stop receiving emails from the study though information you have already shared with the study may still be used for our analysis thank you again for considering participating in our study we truly could not do this without you and we hope that you'll join us in exploring these unanswered questions about fungal infections after finishing this video and moving on to the enrollment survey you'll receive a written copy of this consent information in your email along with contact information for the study team our email is always open if you have questions concerns or thoughts about the study