What is it about?
Pharma, Biotech and regulatory authorities want to connect with patients. How can this be done effectively? What are some of the potential pitfalls and considerations?
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Why is it important?
This is important because business as usual is not producing the desired results. Patients are being invited to sit at the table, but many are not at the table in any form. How can the industry and regulatory authorities better interact with patients?
Perspectives
I started Putting Rare Diseases Patients First! after seeing the challenges that patients have to obtain good quality objective information about clinical trials and the drug development process. I wrote the book, Clinical Trials: What Patients and Healthy Volunteers Need to Know , to address this need. I was surprised to find that patient organizations and groups were not inclined to tell their patients about the book or the information in it, but they were motivated to read it themselves. Again, this raised the question "Who is representing the patient's best interests?" At PRDPF! we seek to give the necessary information directly to the patient with rare diseases, and the parents of children with rare diseases, without filters.
DR LORNA SPEID
Putting Rare Diseases Patients First
Read the Original
This page is a summary of: Don't Do Different Things - Do Things Differently! Drug Development in Rare Diseases: The Patient's Perspective, Clinical Pharmacology & Therapeutics, August 2016, Wiley,
DOI: 10.1002/cpt.403.
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