Two-thirds of rare disease patients and caregivers from four countries report that the rare disease diagnosis took up to five years, while more than half of patient report being misdiagnosed at least once.
BETHESDA, Md., July 15, 2024 -- A new survey of 800 rare disease (RD) patients and caregivers from the U.S., United Kingdom (UK), Spain, and Germany, was conducted by Avant Health and Rare Patient Voice between February and April 2024. 66% of RD patients report taking up to five years to get the RD diagnosed; this ranged between 74% (U.S) and 56% (UK). These results were part of a survey asking RD patient/caregiver opinions about their diagnostic journey, access to healthcare, and perspectives on living with a RD.
The participants were from four countries: 100 from Germany, 168 from Spain, 252 from the UK and 280 from the U.S., with a median age of 44 years; 85% were female; 78% were RD patients, 15% were caregivers of a RD patient, and 7% represented both patient and caregiver.
One in five respondents (21%) reported taking more than 10 years to get their RD diagnosed, and it ranged between 15% (U.S) and 28% (UK). Overall, 54% reported being misdiagnosed at least once, and it ranged between 46% (Germany) and 58% (UK); 72% reported difficulty in finding a doctor specialized in the RD of interest, and it ranged between 67% (U.S) and 80% (Germany). Two-third (67%) reported needing to see >3 specialists before receiving a RD diagnosis, and it ranged between 62% (UK) and 79% (Spain). The survey further revealed that 34% of RD patients were denied diagnostic test/treatment for their RD, and it ranged between 25% (U.S) and 40% (Germany).
"The diagnostic journey for rare disease patients continues to be prolonged, and arduous. The burden appears slightly higher in some of the surveyed European countries; results warrant closer scrutiny to improve health care access and delivery for rare disease patients in concerned geographies," says Siva Narayanan, CEO of Avant Health.
For more information, please contact:
Dr. Siva Narayanan
Avant Health
Bethesda, MD, USA
+1-301-799-8268
380222@email4pr.com
Laura Mullen
Rare Patient Voice
Towson, MD, USA
380222@email4pr.com
About Avant Health
Avant Health, LLC is a consulting firm and a CRO that advises life sciences industry, sharpening the client's commercial, scientific and evidence strategy formulation and execution, accelerating their path to success. Avant's approach integrates strategic insights with evidence generation tactics to reflect on patient's unmet needs and outcomes, and defend product value propositions. For more information, please visit us at: https://avant-health.com.
About Rare Patient Voice
Rare Patient Voice, LLC provides patients and caregivers an opportunity to participate in all types of research including market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials. RPV has over 145,000 patients and caregivers across more than 1,500 diseases, both rare and non-rare. For more information, please visit us at www.rarepatientvoice.com.
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