Rare and complex respiratory conditions—including idiopathic pulmonary fibrosis (IPF), progressive pulmonary fibrosis interstitial lung disease (PPF-ILD), cystic fibrosis, non-cystic fibrosis bronchiectasis (NCFB), pulmonary arterial hypertension (PAH), chronic thromboembolic pulmonary hypertension (CTEPH), PAH associated with congenital heart disease (PAH-CHD), pulmonary hypertension associated with interstitial lung disease (PH-ILD), and non-tuberculous mycobacterial pulmonary disease (NTM-PD)—present amongst the most challenging diagnostic, management, and treatment optimisation scenarios in respiratory medicine. Each presents distinct aetiologies, phenotypes, and clinical trajectories that reflect the profound complexity of rare pulmonary disease across diverse patient populations. With emerging therapeutic options, evolving diagnostic criteria, and growing recognition of disease heterogeneity, robust real-world evidence is essential for understanding disease burden, validating treatment approaches, supporting healthcare access decisions, and ensuring patient voices are central to rare respiratory innovation.
Adelphi Real World’s Rare & Complex Respiratory Specific Programmes (DSPs) are purpose-designed to deliver this evidence.
Our Rare & Complex Respiratory DSPs engage specialist clinicians and patients to generate intelligence grounded in authentic clinical experience:
Condition Recognition & Diagnostic Pathways
Understand how specialist respiratory teams diagnose and identify rare pulmonary conditions—capturing diagnostic approaches, imaging interpretation, specialist referral patterns, and diagnostic timelines in routine clinical practice
Treatment Selection & Therapeutic Strategies
Benchmark real-world therapy patterns: how clinicians choose and optimise treatments—from disease-modifying therapies through advanced targeted treatments and supportive care—across rare and complex respiratory conditions, including treatment sequencing and combination approaches.
Disease Burden & Clinical Impact
Explore condition-specific impacts: disease progression, functional limitation, exercise capacity, exacerbation frequency, organ involvement, psychological burden, work productivity, and quality-of-life consequences for patients and families.
Treatment Outcomes & Effectiveness
Track real-world effectiveness: disease progression, functional stabilisation, symptom control, exacerbation reduction, biomarker improvement, treatment durability, and patient satisfaction across diverse patient populations and specialist care settings.
Unmet Needs & Care Gaps
Identify areas where current management is inadequate, diagnostic delays, treatment barriers, specialist access challenges, and opportunities for therapeutic innovation in rare and complex respiratory care.
Rare & Complex Respiratory Conditions Disease Specific Programmes (DSP) Portfolio
Why Choose Adelphi for Rare & Complex Respiratory Research?
Rare Respiratory Specialisation
Deep expertise across pulmonary fibrosis, bronchiectasis, pulmonary hypertension phenotypes, and mycobacterial pulmonary disease in specialist populations.
Authentic Specialist Clinician Networks
Access to pulmonologists, respiratory physicians, interventional radiologists, respiratory physiotherapists, and specialist nurses across tertiary and specialist care settings globally.
Patient-Centred Approach
Evidence prioritising the lived experience of patients with rare respiratory conditions, including functional, psychological, and quality-of-life impacts.
Comprehensive Rare Disease Coverage
Coverage Intelligence spanning rare pulmonary fibrotic, obstructive, vascular, and mycobacterial conditions across diverse patient journeys.
Rigorous Methodology
Robust data collection capturing both clinical outcomes and patient-reported experiences specific to rare and complex respiratory disease.
Strategic Intelligence
Evidence supporting clinical development, orphan drug positioning, reimbursement, and specialist healthcare provider engagement.
Current Countries Rare & Complex Respiratory DSPs Cover
Who We Collaborate With
We partner with pharmaceutical innovators, pulmonary research centres, specialist respiratory societies, patient advocacy groups for rare lung disease, and healthcare commissioners to advance rare and complex respiratory research and improve outcomes for patients globally.
Ready to Partner?
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Schedule a Consultation: Meet with our rare respiratory specialists to explore how our real-world evidence supports your rare pulmonary programmes.
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Learn About Our Approach: Interested in our clinician networks, global reach, condition expertise, or patient-centred methodology? Contact us for comprehensive information.
Rare and complex respiratory conditions deserve research partners who understand their diagnostic complexity, specialist management challenges, and prioritise the authentic experiences of patients navigating these life-altering diseases. Adelphi Real World brings specialist expertise, authentic practitioner and patient networks, and rigorous methodology grounded in rare respiratory realities. Let’s collaborate to generate evidence that drives innovation and better outcomes for rare and complex respiratory health.
Contact us today using the form below.
Established Respiratory DSPs
Conferences Attending