Allergy and Asthma Research FAQ

Question 1

How does the Allergy & Asthma Network support research?

Accepted Answer

We support research and conduct our own research as part of our core mission to reduce suffering and death due to asthma and allergic diseases. We are committed to educating patients about ways they can get involved in research and helping researchers recruit patients as advisors or participants in their research studies.  We collaborate with researchers on clinical research, health services research, health economics and outcomes research, patient centered outcomes research, and other types of research.

Question 2

Can I find out more about the research projects in which the Network has been involved?

Accepted Answer

We have been involved in a number of recent research projects. We work with researchers to incorporate the perspectives of asthma and allergy patients, including in drug trials  from Phase I to Phase IV.

Question 3

Has the Allergy & Asthma Network been published in the clinical literature?

Accepted Answer

We are actively  involved in allergy and asthma research that is published in the clinical literature.  We also submit letters to the editor and other types of opinion pieces to medical journals and professional publications.

Question 4

In what ways are patients involved in allergy and asthma research?

Accepted Answer

Research in allergies and asthma has brought us some important historical discoveries, and the future seems limitless. Currently, the two main ways patients get involved in research are to: Become a patient advisor to a research study and enroll in a research study as a study participant.

Question 5

How can patients get involved as a study participant?

Accepted Answer

Research often takes on many different forms, from qualitative market research to focus groups to rigorous, scientific drug development. Here are some of the ways patients can be a participant in a research study: contribute data to a patient registry, participate in a focus group, complete a research survey and participate in a clinical trial.

Question 6

What are the different types of clinical trials?

Accepted Answer

Treatment trials test new treatments, new combinations of drugs, or new approaches to surgery or radiation therapy. Prevention trials look for better ways to prevent a disease in people who have never had the disease or to prevent the disease from returning. Better approaches may include medicines, vaccines, or lifestyle changes, among other things. Screening trials test the best way to detect certain diseases or health conditions. Diagnostic trials determine better tests or procedures for diagnosing a particular disease or condition. Quality of life trials (or supportive care trials) explore and measure ways to improve the comfort and quality of life of people with a chronic illness. Natural history studies provide valuable information about how disease and health progress.

Question 7

Who sponsors clinical trials?

Accepted Answer

Clinical trial sponsors can include government agencies, healthcare providers, foundations or nonprofit organizations, pharmaceutical companies, insurance companies and medical device companies.

Question 8

What is patient engagement in research?

Accepted Answer

Patient engagement in research involves active and meaningful collaboration between researchers and patients throughout all phases of a research project, including planning, data collection and analysis, and sharing of findings.

Question 9

What types of research studies involve patients as advisors?

Accepted Answer

Researchers of all types are involving patients in their research studies.  Advisors are used in patient centered outcomes research, investigative studies, survey studies, drug trials and others.

Question 10

How can patients get involved as advisors?

Accepted Answer

Here are some of the ways patients serve in advisory roles: Designing studies  – patient-led research or patient coinvestigators of research. Designing patient centered consents, recruitment materials and study protocols. Advising researchers on sampling recruitment and retaining study participants. Advising researchers on how to make research findings understandable and how to share them in a way that is meaningful to patients. Patients can take on these roles as individual advisors or as part of an advisory board or advisory council.

Question 11

How do patients serve as advisors in the drug development process?

Accepted Answer

There are numerous ways for patients and patient advocacy groups to play an important role in shaping the drug development process and providing meaningful contributions and partnerships. These roles are separate and distinct from patients who are recruited as study participants. They can participate in the prediscovery, preclinical, phase 1, phase 2 & 3, FDA review and approval and during post- approval processes.

Question 12

What is Patient Focused Drug Development?

Accepted Answer

Patient-focused drug development (PFDD) is an approach by the Food and Drug Administration (FDA)  to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation.

Question 13

How can I get involved as a patient advisor in research?

Accepted Answer

No matter what the form, Allergy & Asthma Network is committed to giving you an opportunity to lend your voice and serve as an Everyday Medical Hero. We can connect you with researchers who are seeking patient advisors in research. Please fill out our volunteer form and indicate that you have an interest in becoming a patient advisor in research,  and we will follow up with you when an opportunity arises.

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