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Taj7wfGtoP9NvSYsnuV7sbCG6t9dTs8XafI5cXQK3ccMp5Mb6vYDrnxpSIVnJReSNvw

Collection and analysis of clinical characteristics of aspirin-exacerbated respiratory disease patients

Principal Investigator: Tanya M. Laidlaw, MD

The purpose of this research study is to collect clinical information from patients with aspirin-exacerbated respiratory disease and store it in our secure database. We will use this information to learn more about the disease, generate new research ideas, and hopefully come up with better treatment options in the future.

We hope to collect information from 3000 patients with AERD, and your participation will bring us one step closer to reaching this goal. If you are enrolling online or through the mail, we expect this process to take about 20 minutes to complete. You will not be compensated for your time. If you are a patient at the BWH outpatient allergy clinic, then the study team will enter the medical information already collected as part of your normal clinical care into the database, and no further action is needed from you at this time.

A member of the research team may contact you in the future about additional AERD studies for which you may be a candidate. You may also receive occasional emails from our study team with updates such as our educational newsletter.

The Partners standard is to send email securely. This requires you to initially set up and activate an account with a password. You can then use the password to access secure emails sent to you from Partners HealthCare. If you prefer, we can send you "unencrypted" email that is not secure and could result in the unauthorized use or disclosure of your information. If you want to receive communications by unencrypted email despite these risks, Partners HealthCare will not be held responsible. Your preference to receive unencrypted email will apply to emails sent from this research group/study only.

Your participation in the research study is voluntary. If you do decide to participate, you can request for your information to be removed at any time in the future. Deciding not to participate will not affect medical care you receive at Partners now or in the future or any benefits you receive now or have the right to receive.

Any questions about this research study can be directed to aerd@partners.org

If you'd like to speak to someone not involved in this research about your rights as a research subject, or any concerns or complaints you may have about the research, contact the Partners Human Research Committee at 857-282-1900.

We are required by the Health Insurance Portability and Accountability Act (HIPAA) to protect the privacy of health information obtained for research. This is an abbreviated notice and does not describe all details of this requirement*). During this study, identifiable information about you or your health will be collected and shared with the researchers conducting the research. In general, under federal law, identifiable health information is private. However, there are exceptions to this rule. In some cases, others may see your identifiable health information for purposes of research oversight, quality control, public health and safety, or law enforcement. We share your health information only when we must, and we ask anyone who receives it from us to protect your privacy.

*Partners HealthCare Notice for Use and Sharing of Protected Health Information

http://www.partners.org/Assets/Documents/Notices/Partners_Privacy_Policy_English.pdf

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