Allergy and Asthma Research Projects and Partnership
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. We also assist researchers in recruitments for clinical trials and focus groups. If you would like to work with Allergy & Asthma Network on your research project, please contact [email protected].
Research Projects and Partnerships
AAN will bring together the Hispanic community for a virtual conference series. The series will address specific issues leading to asthma and COVID-19 disparities. Patients, caregivers, families, faith leaders, medical experts, and researchers are welcome to join. The goals are:
- Determine research needs as it relates to Hispanic patients with asthma and COVID-19;
- Discuss how the Not One More Life (NOML) framework can engage Hispanic patients in PCOR/CER;
- define capacity issues and training needs to expand NOML using new online methods.
PCORI: Dissemination of the Evidence Updates for the ASIST asthma research study
Allergy & Asthma Network was invited by the Patient Centered Outcome Research Institute (PCORI) to disseminate research findings of the study, Comparing Two Ways to Manage Asthma in African-American Children — The ASIST Study. This PCORI-funded research compared how well two approaches to managing mild persistent asthma—symptom-based and clinician-based use of a control inhaler—work for children and teens. We will work with the study’s lead author to disseminate the findings published in the Evidence Update for this study. The new PCORI Evidence Update helps inform families and clinicians about choosing the best option for managing mild persistent asthma in children and teens. These communications will be tailored for health care professionals as well as patients and caregivers.
The goal for this project is to reach agreement on a “core set” of study outcomes to use in clinical trials. The clinical trials study therapies for moderate to severe asthma. The outcomes focus on a set of Quality of Life measurements for people suffering from moderate to severe asthma. The project brings a diverse group together. Patients, caregivers, patient advocates, health care providers, and other stakeholders can join. This is a new phase of a project begun in 2019. Allergy & Asthma Network served on the coreAsthma Advisory board members for phase 1. Phase 1 resulted in 5 core patient reported outcomes to use in clinical trials. The team will continue to collaborate with phase 2 and until the entire project is complete.
2020 – present
This partnership with embleema will help us better understand the impact of COVID-19. The registry will allow for a greater insight into how COVID-19 affects a person’s life. Researchers will gain a deeper understanding about concerns people are facing during the COVID-19 pandemic.
The main goal for this study is to determine if asking asthma screening questions at the beginning of visit will improve the patients’ visit. It will assess asthma patients’ experiences when healthcare providers use the PRECISION program. The last aim is to analyze if there is change in AIRQ™ scores from the initial visit and follow-up visits. This study is a sponsorship with AstraZeneca.
2020 – 2021
Allergy & Asthma Network’s Not One More Life program team engages stakeholders in a virtual conference series to disseminate Patient-Centered Outcomes Research (PCOR) findings and better understand the needs and gaps to engage African American asthma patients in research. Not One More Life involves faith-based and healthcare community leaders who host health screenings and educational programs to help African American asthma patients better manage their asthma. This conference series is designed to: 1) inform emerging research needs as it relates to African American patients with asthma; 2) discuss future plans to expand Not One More Life beyond asthma to include COVID-19; and 3) develop programs to educate African American patients with asthma to become participants in all aspects of patient-centered outcomes research.
2017 to present
Now in its third year, Allergy & Asthma Network’s research team continues efforts in recruiting 1,200 African-American and Hispanic/Latino adults, ages 18 to 75, who have asthma, use an ICS inhaler, and have had an asthma attack within the past year. As Patient Advocacy Stakeholders, we ensure that the patient voice is heard and incorporated into all aspects of the PREPARE study including study design, study implementation, analysis, interpretation and development of understandable messages for dissemination. Allergy & Asthma Network is advising the research team in study design, materials, recruitment and retention strategies.
Increasing Diversity in Clinical Research
In collaboration with Antidote Technologies
Survey of 4,000 patients and caregivers about their attitudes towards clinical research.
The survey revealed several factors that affect the participation of people of color, including trial type preferences, motivations for and barriers to taking part in a clinical trial, and logistical factors.
Patient Activation Measurement Study (PAM)
In this study, Allergy & Asthma Network partnered with HealthUnlocked to evaluate the impact of online peer support offered by the ‘Living with Asthma’ community on its newly registered members using validated outcomes measures and by analyzing self-reported information from users before and after joining the community relating to their attitude towards managing their condition.
coreAsthma – Core Outcomes in Moderate to Severe Asthma
The goal for this project is to reach agreement on a “core set” of study outcomes to be used in clinical trials of therapies for moderate to severe asthma. The project brings together patients, caregivers, patient advocates, health care providers, payers, and other stakeholders. In 2019, the Allergy & Asthma Research Team Served as coreAsthma Advisory Board Members and will continue to collaborate until the project is complete in 2020.
Antidote/AAN Survey – Patient Perspective on Clinical Research
This report is meant to shed more light into the reasons behind the low participation by reporting on the motivators of some of the people we would expect to know the most about clinical research – patients with asthma, allergies or other conditions. The information they provided about why they joined a clinical trial or about what would motivate them to participate in the future provides valuable insight that can enable deeper engagement with patients and physicians in more significant ways.
This study also reaffirms the influence physicians and other health care practitioners have. The importance of their roles cannot be overstated: Patients want to hear about clinical trials primarily from medical professionals. Furthermore, talking with the doctors or clinical researchers involved in a trial would make these patients feel more like a partner in the research.
Patient Reported Outcomes Consortium
Despite a number of safe and effective therapies to treat asthma available, a high proportion of patients remain symptomatic and at risk for exacerbations. No standard PRO measure currently exists for asthma that is fit for measuring important patient-experienced aspects of the disease. Such a measure could be used in addition to measures like spirometry assessment of lung function in the development of drugs for the treatment of persistent asthma. The Network partnered with the Asthma Working Group to develop the Asthma Daily Symptom Diary (ADSD) that will help capture the core symptoms of asthma in adolescents and adults for assessment and treatment benefit.
The Network conducted a survey of more than 1,000 asthma patients and published the findings in Pediatric Respiratory Review in November 2017. The article, “What Do Patients Want From Their Asthma Doctor,” was written by Bruce K. Rubin, MD and Tonya Winders. Most of those who responded wanted convenient access to their doctor, more time spent in ofﬁce visits with greater attention paid to the patient, help in navigating insurance and prescription costs and paperwork, and a partnership in developing care plans.
OPEN Asthma Survey
The Observations of Patient Experience in the Nation (OPEN) Asthma Survey was commissioned by the Allergy & Asthma Network and sponsored by Boehringer Ingelheim Pharmaceuticals, Inc. to explore current attitudes of healthcare providers and patients about asthma control with the goal of identifying areas for improvement. The survey included people living with asthma who were treated with daily prescription medicine, as well as healthcare providers who treat patients with asthma.
Other Clinical Research and Market Research Projects and Partnerships in 2018-2019
- Organized patient focus groups for clinical protocol design
- Assisted in recruitment for IRB-approved clinical trials
- Conducted market research for new product design
- Conducted market research to trend beliefs, behaviors and trends in asthma and allergy care
- Aided in patient focus groups for protocol design
- Aided in recruitment for IRB-approved clinical trials
- Conducted market research to support the research and development process
- Conducted market research to trend beliefs, behaviors and trends in asthma and allergy care
- Provided input into patient-reported outcomes and quality of life instruments to be used
- Reviewed patient-related materials (informed consent forms, educational materials)
- Assisted with recruitment and retention
- Evaluated data and advise on relevancy
- Assisted in development of patient communication at conclusion of trial