Part 1: Rare Disease Clinical Research – Spotlight on the Patient and Caregiver, Upcoming Webinar Hosted by Xtalks

Share Article

In this webinar, Medpace partners with the Batten Disease Support and Research Association (BDSRA) 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.

Xtalks Life Science Webinars

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.

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.

The featured speakers include:

  • Miaesha Campbell, Director, Patient Recruitment, Medpace
  • Tauna Batiste, Executive Director, BDSRA
  • Noreen Murphy, Patient and Family Education Coordinator, BDSRA

Join the live webinar on Thursday, February 27, 2020 at 11am EST (4pm GMT/UK) 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

This webinar is first in a 3-part series on rare disease clinical research:

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

Part 2: Rare Disease Clinical Research – A Deep Dive into Regulatory Strategies & Considerations

Part 3: Rare Disease Clinical Development – Strategies for Ensuring Endpoint Integrity

Share article on social media or email:

View article via:

Pdf Print

Contact Author

Margot Rubin
Xtalks
+1 (416) 977-6555 x 352
Email >
Visit website