Part 1: Rare Disease Clinical Research – Spotlight on the Patient and Caregiver

In this webinar, Medpace partners with the Batten Disease Support and Research Association to discuss the need to educate patients and their caregivers on the importance and increase of clinical trials aimed at finding effective therapies and cures for rare diseases. This includes identifying the appropriate communication pathways and using them to develop effective outreach strategies aimed toward providing caregivers and patients with what they need to find and enroll in clinical studies.

It is important that sponsors leverage different methods of study awareness such as broad-based communications to reach patients. These methods may include sending letters, emails and newsletters to patient advocacy groups’ member databases, and creating websites and social media posts to post study information. Additionally, hosting informational meetings to walk through study participation and providing educational support materials for a greater understanding of the study are useful strategies for recruiting patients.

Once recruited into a clinical study, it then becomes paramount to provide ongoing support and reassurance by focusing on the needs and concerns of the patient and caregivers. This type of tailored support will lead to greater retention on studies, which leads to the collection of needed data for primary endpoints and then ultimately faster therapies to market.

Join this free webinar to learn about:

• How contract research organizations and sponsors can work collaboratively with advocacy groups to raise awareness, train and support patients and caregivers
• Patient-centricity – how to make the buzz word a reality
• Tools and tactics – what works and what doesn’t
• Special considerations for pediatrics and young adults

To register for the other parts in this webinar series, please click below:

Speakers

Miaesha Campbell, Director, Patient Recruitment, Medpace

Miaesha Campbell is an accomplished professional with over 12 years of experience directing a global team of strategic partners, support staff and vendors for multimillion-dollar global marketing, patient recruitment and patient retention campaigns. This includes oversight of the planning and execution of programs with budgets ranging from $250,000 to $17 million. Miaesha graduated from California State University at Dominquez Hills in May 2002, earning a Bachelor of Arts degree in English and a Minor in Communications. Her early career was spent in public relations, and she was recruited to support the marketing of clinical trial programs in 2007.

Message Presenter

Tauna Batiste, Executive Director, Batten Disease Support and Research Association (BDSRA)

Tauna Batiste, MS is the executive director of the Batten Disease Support and Research Association (BDSRA). BDSRA is a national nonprofit with an international reach; supporting patients and research, educating and advocating for those affected by Batten disease. She has over 20 years of professional experience in nonprofit operations. Beginning her lifelong career as a youth volunteer, Tauna has held roles in fundraising consulting, project management, program design and management, patient support and executive leadership. She hails most recently from the National Hemophilia Foundation (NHF), Central Ohio Chapter, where she served as executive director, overseeing and providing services to the bleeding disorders community in a 28-county territory. With NHF, she was able to increase Central Ohio Chapter patient engagement 500 percent, engaging new and lapsed patient families. Prior to joining NHF, she served at United Way of Central Ohio where she managed the E3 program and acted as the interim director of Champion of Children. Tauna earned her Master’s degree from Eastern University and undergraduate degree from Taylor University – Ft Wayne.

Message Presenter

Noreen Murphy, Patient and Family Education Coordinator, Batten Disease Support and Research Association (BDSRA)

Noreen Murphy is the director of education and advocacy at the Batten Disease Support and Research Association (BDSRA). She works closely with experts in a variety of fields to create educational resources for families on many topics. Current resources include regular Ask-An-Expert chats, monthly newsletters, the Annual BDSRA Family Conference, materials for teachers and the New Family Packet. Noreen also administers BDSRA’s annual research grant cycle. Prior to her five years with BDSRA, Noreen obtained a Master’s degree in International Administration and Non-Profit Management from the University of Denver. Noreen has worked for nonprofits her whole career and is passionate about using her skills to make a positive impact in the world.

Message Presenter