Tag: patient advocacy

Patient and Stakeholder Engagement

Working with Advocates: Understanding Patient Concerns and Why They Matter in Clinical Trials

Patient advocacy groups have exploded in number and scope in recent years and in many ways are reshaping the drug development landscape, from trial design to recruitment support to participation in the regulatory approval process. Thousands of organizations now advocate for millions of patients, and while many patients and families eagerly engage with these groups,...

Patient and Stakeholder Engagement

Premier Research Champions Patient Advocacy Community

DURHAM, N.C., February 28, 2019 — As part of its commitment to supporting the patient advocacy community and as a kickoff to Rare Disease Day on February 28 and March as Rare Disease Month at the company, Premier Research is announcing both a new scholarship for rare disease patient advocates in partnership with Professional Patient...

Clinical Research: Phase 1 - Phase 4

Premier Insight 267: From KOLs to Patient Advocates, Using Every Tool to Fight a Rare Disease

The indication: a basal cell carcinoma known as Gorlin syndrome, a disease that manifests itself in large numbers of benign tumors that grow on various parts of the body. The sponsor: a very small, virtual company consisting of a handful of contractors pursuing success in the form of a topical gel, which had only ever...

Patient and Stakeholder Engagement

Expert to Address Patient Advocate Role in Novel Drug Development

DURHAM, N.C., OCTOBER 19, 2017 — Premier Research’s head of patient engagement will address patients’ emerging role in the development of novel drugs October 23 at the Cambridge Rare Disease Network Summit in Cambridge, U.K. Juliet Moritz, the CRO’s Executive Director for Patient Engagement and Strategic Development, will discuss how patient advocacy groups are greatly...

Patient and Stakeholder Engagement

Stories of Courage and Hope: Key Takeaways from Disorder: The Rare Disease Film Festival

Every so often, you stumble onto a marketing partnership that just seems to fit. When we were approached earlier this year about a rare disease festival happening in October, we knew immediately that we had to be a part of it. Who could pass up the opportunity to be part of a first-of-its-kind event that...

Patient and Stakeholder Engagement

Patient Engagement Exec. Director to Speak on Rare Patient Advocacy

DURHAM, N.C., September 13, 2017 — Premier Research’s head of patient engagement will address patients’ emerging role in the development of novel drugs at the Global Genes RARE Patient Advocacy Summit in Irvine, California. Juliet Moritz, the CRO’s Executive Director for Patient Engagement and Strategic Development, will join Alvin Shih, CEO of the biotech company...

Consulting

4 Historical Orphan Drug Development Barriers, Have We Broken Through?

Both understanding the role of patient advocacy groups in building better clinical trials and improving the research process mean first taking a look at the history of orphan drug development in the United States and Europe. An “orphan drug” is a drug that treats a condition that fewer than 200,000 people have. Because rare diseases...

Consulting

The Rise of Patient Advocacy

The effects of rigorous patient advocacy are easily seen today throughout the pharmaceutical industry. Patients who suffer the debilitating effects of rare diseases are banding together to be heard in an attempt to have their conditions studied to further the development of treatments and cures. However, the influence of patient advocacy groups has not always...

Patient and Stakeholder Engagement

The Future of Patient Advocacy and Orphan Drug Development: Challenges and Opportunities

Despite advances in the orphan drug development process and the more prominent role that patient advocacy groups now play, researchers in this area still face a number of challenges. But, fortunately, increased collaboration between patient groups, industry leaders, and regulatory bodies can help overcome these hurdles. Barriers to orphan drug research include: Small population By definition,...

Patient and Stakeholder Engagement

Rare Disease Expert to Discuss Role of Patient Advocates at WODC Europe

DURHAM, N.C., November 16, 2016 — From discovery to approval to market entry, patient advocacy groups are quickly expanding their role in drug development as they target vast unmet needs in cancer and rare disease treatment. One of Premier Research’s rare disease strategists will discuss this trend, and its implications for the industry, at this...