Survey: Your experience matters! If you’re an adult in the US, Bosnia and Herzegovina, Slovenia, Croatia, Poland, Serbia, Malta, or Ukraine, we hope you are willing to answer a few questions about the mental health impact of living with chronic atopic and/or airways diseases-we need your voice. Share your journey and thoughts on your needs in our survey. Help shape the future of patient education. Click here to participate.
Atopic Dermatitis/Chronic Eczema
Survey: We want to hear from you! Are you 18 years old or older and a patient diagnosed with atopic dermatitis/chronic eczema or a caregiver for a child older than 6 and younger than 12? If you’re in the US your experience can greatly aid our educational initiatives. Share your journey in our survey. Click here to participate.
Asthma
Clinical Trial Recruitment: Help researchers test a modified asthma inhaler with an approximately 90% lower carbon footprint.
Inclusion criteria:
Mild to moderate asthma
18 years or older
Click here to see if you are eligible to participate!
Advisory Board: Do you live in the US, have asthma or care for a child with asthma, currently using an albuterol inhaler? Lend your lived experience by participating in a patient and caregiver advisory board.
Inclusion criteria:
18 Years or older or a caregiver for a child with asthma
Diagnosis of asthma at least 6 months ago
Currently using Albuterol MDI as a reliever/rescue therapy
Fluent in English
You will be compensated for your time!
If you are interested in offering your advice through 6-8 virtual (online) sessions, please email us at research@gaapp.org.
Bronchiectasis
Bronchiectasis Understanding and Research on Daily Experiences and Needs or The BURDEN initiative is a research project to examine the impact of Non-Cystic Fibrosis Bronchiectasis (NCFBE) on the everyday life of people living with NCFBE and their caregivers. It is also commonly referred to as bronchiectasis (without cystic fibrosis) or just bronchiectasis. Bronchiectasis is a chronic, often progressive lung disease characterized by irreversible and abnormal widening of the bronchi and chronic symptoms. For more information, click here!
Chronic Cough
Advisory Board: Looking for 3 patients with a recurrent chronic cough in Germany, Italy and Spain
Inclusion criteria:
18 years old or older
Speaks English
Lives in Germany, Italy or Spain
Willing to provide feedback on chronic cough
Email research@gaapp.org if interested in lending your voice to research!
For other opportunities that become available, visit our recruitment webpage here
GAAPP at the 7th Global Urticaria Forum
Kristen Willard and Victor Gascón Moreno attended the 7th Global Urticaria Forum in Berlin, Germany. GAAPP works with GA2LEN on a daily basis to facilitate the access of patients in awareness, education, advocacy and research for Urticaria and organizes the Patient Organization Corner every year at the Conference where patient organizations have a space to engage with researchers and experts to foster a multistakeholder collaborative environment for the advancement in Urticaria research and management.
GAAPP Co-authored Publications
Best practice advice for asthma exacerbation prevention and management in primary care: an international expert consensus. NPJ Prim Care Respir Med. 2024;34(1):39. Published 2024 Nov 17. Skolnik N, Yawn BP, Correia de Sousa J, Vázquez MMM, Barnard A, Wright WL, Ulrich A, Winders T, Brunton S.
The Reliever Reliance Test: evaluating a new tool to address SABA over-reliance. NPJ Prim Care Respir Med. 2024;34(1):36. Published 2024 Nov 5. Moon Z, Kaplan A, Mak V, Nannini L, Winders, T, Chan A, Foot H, Horne R.
Polygenic and transcriptional risk scores identify chronic obstructive pulmonary disease subtypes in the COPDGene and ECLIPSE cohort studies. EBioMedicine. Published online November 6, 2024. Moll M, Hecker J, Platig J, Zhang J, Ghosh AJ, Pratte KA, Wang RS, Hill D, Konigsberg IR, Chiles JW 3rd, Hersh CP, Castaldi PJ, Glass K, Dy JG, Sin DD, Tal-Singer R, Mouded M, Rennard SI, Anderson GP, Kinney GL, Bowler RP, Curtis JL, McDonald ML, Silverman EK, Hobbs BD, Cho MH
Perspectives on Treatment Decisions, Preferences, and Adherence and Long-term Management in Asthma and COPD: A Qualitative Analysis of Patient, Caregiver, and Healthcare Provider Insights which has been accepted for publication in “Patient Preference and Adherence”. Román-Rodríguez M, McMullan I, Warner M, Compton CH, Tal-Singer R, Orlow JM, Han MK.
Relevant News
The November 2024 updated version of the CAAT user guide was translated into Spanish, German and Japanese thanks to generous support from Sanofi. Translations of the CAAT and its user guide are available on https://gaapp.org/caat-cat/
CAAT Validation in non-CF bronchiectasis BRIDGE sub-study will include the assessment PGI-C and PGI-S in addition to other PROs already included in the study. We are grateful to Boehringer Ingelheim for providing additional support that would enable addition of the endpoint and a pilot validation study in a US cohort.
Save the date and prepare to submit your innovative abstracts on investigations in chronic airways diseases!
Save the date and prepare to submit your innovative abstracts! GAAPP will co-host the International Collaborative Airways Network (ICAN 3) meeting on May 15-16th, 2025, in San Francisco, CA. This two-day event highlights the work of early investigators in chronic airways diseases who are seeking novel approaches to topics like environment, genetics, nonT2 pathways, etc. We will open abstract submission in early January so stay tuned at https://ican.gaapp.org/
From the Chief Scientific Officer Desk
December is a short month as we get ready to spend the holidays with beloved people and animals, reflecting on the progress and community impact of 2024 efforts, and recharging for a productive 2025.
I participated in the first of several podcast episodes on Clinical Research in GAAPP’s President Tonya Winders-led “Passion for Patients Podcast” series and I hope that you find the information helpful. You can watch here.
I participated in the recent episode of the GAAPP Academy and spoke to our VP of Education Kristen Willard about ways Member Organizations can join various research efforts.
On December 9-10th, I attended the 1st North American Bronchiectasis and Non-Tuberculous Mycobacteria Symposium in New York, hearing from distinguished clinicians and researchers about phenotypes in bronchiectasis, the lung microbiome, and about new future therapies for bronchiectasis, NTM, and related lung conditions.
It is always wonderful to keep learning so we can better serve our community. Beyond the science presented at the conference, what resonated the most for our work as GAAPP is the importance of translation of evidence-based patient education materials and simple infographics when we aim to improve care and address the risk for health disparities (an example is all the resources prepared by the World Bronchiectasis Day collaborators).
I am grateful to our collaborators and member organizations who reached out to us for help in developing and implementing new global research efforts. We are here to support you!
I wish everyone Healthy, Safe, and Peaceful holidays!
