Research

Optimize the inclusion of the patient voice and perspective in the generation of high-quality data

Mission

We strive to empower our member organizations and collaborators by sharing our extensive experience in ethics, clinical trials, survey research, focus groups, and other facets of patient-centered research and supporting the development of treatments and diagnostics

Vision

To help coordinate and harmonize our collaborative activities and optimize the inclusion of the patient voice and perspective in the generation of high-quality data 

“Don’t listen to the person who has the answers; listen to the person who has the questions…”
— Albert Einstein

For Researchers: GAAPP Research Capabilities

  • Advisory consulting: patient-centered trial design and strategy​
  • Trial participants, and patient investigators recruitment​
  • Global patient, caregivers and healthcare provider (HCP) survey design, implementation, analysis, and reporting ​
  • Focus groups recruitment and implementation​
  • Process improvement design and implementation​
  • Contribution to publications ​(patient and caregiver perspective)​
  • Preparation and dissemination of lay terms (translated) summary reports

For a consultation or request for proposal email research@gaapp.org. 

For Patients, Caregivers, and Healthcare Providers: How to Get Involved in Research

GAAPP and its member organizations are recruiting patients, caregivers or providers for participation in research surveys, clinical trials, advisory panels, and focus groups.

GAAPP-supported patient/caregiver ambassadors can conduct research:

  • Serve as patient/caregiver representative on research advisory boards 
  • Support patient-centered research by providing the patient perspective/elevating the patient voice
  • Participate in the evaluation of patient and stakeholder engagement in the development of therapies, digital tools, and medical devices

How can patients and caregivers investigators contribute to clinical trials?

  • Develop the research question and relevant study outcomes 
  • Define the characteristics of study participants
  • Draft or revise study materials and protocols
  • Participate in recruitment of study participants
  • Participate in data collection and analysis
  • Participate in publications and communications

Source: From Molecules to Medicines ToolKit

Educational Resources on Research

Welcome to a curated list of GAAPP resources designed to support your use of our research and recruitment tools. Please contact us at research@gaapp.org with any questions or suggestions. 

The US Food and Drug Administration has helpful resources on patient engagement: https://www.fda.gov/drugs/development-approval-process-drugs/cder-patient-focused-drug-development

The European Federation of Pharmaceutical Industries and Associations (EFPIA) position on patient engagement: https://www.efpia.eu/media/676506/final-efpia-position-on-transparency-of-patient-evidence-in-regulatory-decision-making-and-product-information.pdf

Patient Engagement Digital Roadmap engages the patient community in the design and development of digital health solutions. Learn more here: https://26134448.fs1.hubspotusercontent-eu1.net/hubfs/26134448/PFMD%20Digital%20Health%202024/PE%20Roadmap_Public%20Consultation.pdf

Archive of previous newsletter issues: https://gaapp.org/newsletters/ 

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Episode 5: In this episode we discuss where innovation meets accessibility in the world of clinical trials. Dr. Ruth Tal-Singer, Chief Scientific Officer at the Global Allergy and Airways Patient Platform (GAAPP), alongside our host, Tonya Winders. Dr. Tal-Singer brings her vast experience in drug development and patient advocacy to the table, highlighting how digital evolution is reshaping clinical trials. Episode Highlights:

  • Bridging the Gap Between Approval and Access: Discover the importance of aligning clinical outcomes with stakeholder priorities to ensure that once a medical product is approved, it remains accessible to patients.
  • Revolutionizing Participation: Explore how digital tools like biosensors, adherence monitors, and electronic diaries are transforming trials, making it easier for participants to engage from the comfort of their homes.
  • Understanding Patient-Centric Outcomes: Learn about the critical role of patient- reported outcomes and how they advance personalized medicine by providing insights into patients’ health conditions and treatment impacts directly from their perspectives.
  • Navigating Clinical Trial Processes: Dr. Tal-Singer highlights key elements of clinical trials, including ethical considerations, volunteer experiences, and the importance of comprehensive research.
  • Link:  https://youtu.be/JUQiAinyBsk

In future episodes: we will explore the integration of AI in clinical research and the role of patients in research.

How to Get Involved in Research

Currently recruiting opportunities: Research Recruiting Opportunities

Additional studies may be found here: Clinical Trials Match Tool

Clinical Trials Match Tool

GAAPP has partnered with “Antidote” to provide a simple tool to access and match with clinical trials. The tool takes into consideration not only your condition but the country and city where you are based. The clinical trials are sourced from all relevant databases, and the 60-second matching process presents the information in a simplified manner for all patients to understand. Learn more

 You can also search recruiting clinical trials in your area at www.ClinicalTrials.Gov

Last Edited: 10/01/2024