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Research among patients is vital to closing the information asymmetry between drug producers and end users. For many diseases, finding patients willing to share their experiences is no issue at all. However, conducting research among rare disease patients is a unique challenge due to, you guessed it, the rarity of their disease.
During our 2017 webinar “Research for Small Markets and Samples” I made the point that small market business objectives addressed via central tendency measures are less helpful – I would like to revisit and challenge this.
How long does it take to ascertain the correct diagnosis? Which doctors will patients see, and who will they be referred to next? These seemingly direct questions are often all too complicated in rare disease. If we could better educate providers about disease symptoms and triggers, perhaps patients could be diagnosed sooner, and begin appropriate treatment sooner as well. That’s exactly what the International Pemphigoid and Pemphigus Foundation (IPPF) had in mind. Read the full post to learn how we helped!
What is patient journey? There is often overlap and sometimes interchangeable terminology among patient journey, patient flow through the healthcare system, and the treatment buying process. In rare diseases, the patient journey can be even more critical, as there may be a lack of internal knowledge, published data, or even currently available treatments. Read the full post to learn more!