Building capacity for patient-centered Clinical Comparative Effectiveness Research (CER) on rare lung disease
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASO-42389)
Project Information
*The SEED Method was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (#1310-07664) to Emily Zimmerman (Principal Investigator), Center on Society and Health at Virginia Commonwealth University.
We built the foundation.
In Year 1, we brought together families, patients, physicians, and researchers to lay the groundwork for patient-centered clinical comparative effectiveness research in chILD.
- -Trained a diverse community of stakeholders in research fundamentals
- -Conducted family focus groups across four chILD life-stage groups
- -Interviewed physicians and researchers to identify clinical gaps and priorities
- -Hosted a two-day hybrid working meeting in Denver to develop research questions together
- -Identified key priority areas to guide Year 2
Now we go deeper.
Year 2 brings families together by diagnosis type to develop disease-specific research questions — and expands the conversation to include clinicians, industry partners, researchers, and policymakers.
- – Expert Stakeholder Interviews & Focus Groups (May – Oct 2026)
- – Disease-specific Family Topic Groups (Sept 2026 – Jan 2027)
- – New program development working groups launching in Year 2
Your voice matters. We want you at the table.
Year 2 family groups are organized by diagnosis type so families can work with others who share similar biology, research questions, and treatment pathways. Groups forming in each of the following areas:
Don’t see your diagnosis listed? Sign up anyway — we want to hear from you and will do our best to connect you with the right group.
Get involved in Year 2!
There are two ways to participate — choose the one that fits your experience and availability. Not sure where you fit? Sign up and we’ll help find the right match.
Family Topic Groups
Families and patients meet in small groups organized by chILD diagnosis type to develop and prioritize research questions. This is the heart of the patient-centered comparative effectiveness research process — your lived experience directly shapes the research agenda.
📅 September 2026 – January 2027 ~15 hours total · 4 meetings over 3 months- Parents & caregivers of a child with a chILD diagnosis
- Patients age 18 and older living with a chILD diagnosis
- Patients age 13–17 (with parent or guardian permission)
Stakeholder Interviews & Expert Focus Groups
We are seeking professionals and organizations with expertise relevant to the chILD community for one-time consultations on five priority topics. Your input will directly inform the research questions families develop.
📅 May – October 2026 One-time · 1–4 hours (interviews ~1 hr · focus groups ~2–4 hrs)- Physicians, nurses & allied health professionals
- Researchers & bioinformatics experts
- Industry partners (pharmaceutical, device, diagnostics, health IT)
- Payers, policymakers & health systems leaders
- Rare disease advocates & patient organization leaders
We are seeking a wide range of diagnoses and geographic backgrounds across North America. If you aren’t selected for this cycle, we will reach out when future opportunities open.
New in Year 2: Program Development Working Groups
Building directly on what families and physicians told us in Denver, we are launching two new working groups to begin developing real programs for the chILD community. These groups bring together families, clinicians, and experts to lay the groundwork for pilot programs in two areas of urgent need.
Transition to Adulthood
Young adults with chILD often fall through the cracks when moving from pediatric to adult care — and most institutions have no formal transition program at all. This working group will help define what a real transition support program for chILD looks like and what research questions will guide it.
- Young adults (13+) living with a chILD diagnosis
- Parents of teens & young adults navigating this transition
- Clinicians, social workers & transition specialists
Undiagnosed chILD
Families living without a diagnosis face some of the most profound challenges in the chILD community — including navigating emergency care, fighting for coverage, and living with chronic uncertainty. This working group will begin building the infrastructure for a pilot program to better support these families.
- Caregivers or patients who have been seeking a diagnosis for 1+ year
- Clinicians with experience in rare or undiagnosed conditions
- Researchers in diagnostics, genetics & rare disease
Working group activities and time commitments are still being finalized. Express your interest and we’ll be in touch with details.
