clinical and research registry
PACCRR Fact Sheet
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 asthma 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 (on paper, on-line at http://www.asthma.partners.org, or in the waiting room of your doctor’s office). We estimate it will take around 20 minutes to complete. By filling out the questionnaire, you are joining our registry.
- We will link basic asthma-related information from your medical record (breathing tests, allergy tests, etc.) to your questionnaire information in our secure database.
Important facts about the Registry:
- We are inviting all Partners’ Asthma Center patients with asthma who are adults (age 18+) to join the registry—up to 18,000 people!
- Drs. Scott Weiss and Angela Rogers are the Principal Investigators of this study. Dr. Rogers can be reached at firstname.lastname@example.org or 617-525-2045 with questions or comments. Our study coordinator Laura Ting (email@example.com) is also available from 9-5 Monday through Friday at 617-525-0953. If you change your mind about participating in the Registry, you can call or email Dr. Rogers or Ms. Ting at any time in the future to withdraw from the study.
- The Registry will be used both for research and quality improvement purposes. The database used by researchers will NOT contain any identifying information about you (your name, date of birth, etc.)—codes will be used instead.
- As part of the questionnaire, we will ask you whether we can contact you in the future to tell you about asthma research projects that might be of interest to you. If you agree, we will keep your name and contact information in a separate file to tell you about future studies. Only Registry personnel would have access to this confidential information.
- 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.
- 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.