Partners Asthma center clinical and research registry
Partners Asthma Center launched a new initiative: forming the Partners Asthma Center Clinical and Research Registry (PACCR Registry). We hope to gather information about the asthma-related well-being of our patients for two main purposes:
- To improve our patient care services and
- To perform research on the causes of asthma and new therapies to treat it.
We will ask questions like the following: How long have you had asthma? What medicines do you take for your asthma? How well are your asthma symptoms being controlled? Do you have an asthma action plan for asthma flares?
To take part in the Clinical and Research Registry:
- Fill out the questionnaire by clicking on the link below; we estimate it will take around 20 minutes to complete.
- We will link basic asthma-related information from your medical record (breathing tests, allergy tests, etc.) to your questionnaire information in our secure database.
To see a fact sheet with additional details about the registry, click here. All questionnaires and medical information will be kept confidential, password protected, and our websites are protected by a secure firewall. The database used by researchers will not contain your name, or any other identifying information (this will be replaced with code numbers). Only IRB-approved Partners researchers will have access to the database. Your identifying information (name, contact information) will be kept in a separate file that can only be accessed by Registry investigators. If you have questions you can phone Laura Ting, our study coordinator from 9-5 Monday through Friday (617-525-0953). If, after filling out the questionnaire, you wish at any time to have your information removed from our database, you may also call the above telephone number, or email the Principal Investigator of the PACCR Registry, Dr. Angela Rogers, at firstname.lastname@example.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 617-424-4100.
Thank you for taking the time to fill out the questionnaire and to join the PACCR Registry. Like all research studies, participation is completely voluntary. If you decide not to participate in this study, it will not change the medical care you receive at Partners’ Health Care, now or in the future. We greatly appreciate the contribution of participants and recognize this work cannot be done without our patients.
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 (see Partners Privacy Notice*). 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