rare disease patient Archives - MedPanel

Informing HEOR Models with Primary Market Research in Rare Diseases

admin — Mon, 19 Jan 2026 08:12:03 +0000

HEOR models are only as credible as the inputs behind them. In rare diseases, those inputs are frequently incomplete: natural history is poorly characterized, endpoints are inconsistent, and small, fragmented patient populations amplify uncertainty in both clinical and economic parameters (Grand et
al., 2024; Pearson et al., 2018).

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Primary Market Research Illuminates Endpoints in Rare Disease RWE

admin — Wed, 12 Nov 2025 18:29:53 +0000

Real-world evidence (RWE) underpins modern health economics and outcomes research (HEOR), especially when traditional clinical trials are infeasible in rare diseases. Small patient populations, varying symptoms, and uncertain etiology can limit trial insight and complicate endpoint selection.

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MedPanel Insights: Challenges in Treating Rare Disease Patients

admin — Mon, 29 Apr 2019 10:59:19 +0000

100 rare disease treaters in the US and the UK shared their biggest challenges in treating and managing rare disease patients.

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MedPanel Insights: Pharma involvement in rare disease patient groups

admin — Mon, 25 Mar 2019 15:12:51 +0000

MedPanel asked 100 rare disease treaters in the US and the UK if pharmaceutical companies should be involved in rare disease patient advocacy groups.

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MedPanel Insights: Rare disease treaters share their needs in managing patients

admin — Thu, 28 Feb 2019 13:10:28 +0000

In what care setting do doctors see patients with rare diseases? How do they keep up with treatment advances? Can pharmaceutical companies support rare disease treaters and the patient community? Those were just some of the questions addressed by exclusive research carried out by Cambridge, Massachusetts-based healthcare market research company

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