Global Rare Disease Studies Recruitment and Retention Report 2020: Baseline Challenges & Perspectives, Recruitment Methods, Retention Practices, Study Data

DUBLIN, Dec. 17, 2020 /PRNewswire/ -- The "Designing for Recruitment and Retention in Rare Disease Studies" report has been added to ResearchAndMarkets.com's offering.

Designing for Recruitment and Retention in Rare Disease Studies report takes a deep dive into two areas impacting the success of these studies: recruitment and retention. Given the importance of each rare disease patient, these activities are time-intensive and resource-heavy. We asked 125 respondents involved in these activities about the challenges they face, methods and support services used, and their perspectives and practices regarding patient-friendly alternatives to the clinical setting.

An area of a clinical study that is gaining momentum is a rare disease. The publisher acknowledges pharma's growing interest in this space. While this means opportunity for the drug development industry, the unique nature of rare disease studies is burdensome. Greater challenges are baked into rare disease studies compared to typical studies: very small patient pools, specialized protocols, difficult-to-define endpoints, often very sick patients with limited ability or time, and the predicament of high cost versus low volume.

Sponsors:

• Understand the recruitment and retention challenges facing rare disease studies and how to mitigate them
• Learn the practices and support services being utilized for rare disease studies, plus perspectives on unconventional methods
• Explore various patient-friendly alternatives to the clinical setting and their impact on patient retention

Service Providers:

• Understand the pain points associated with recruitment and retention activities in rare disease studies
• Gain insight into rare disease study preferences and practices, and use this information to evaluate/market your offerings
• Learn the specific support services needed by sponsors to best accommodate patients in rare disease studies

Major Topics:

• Baseline Challenges & Perspectives
• Recruitment Methods
• Retention Practices
• Study Data

Key Topics Covered:

1. Baseline Challenges & Perspectives

• Primary Section Takeaways
• Challenges in Finding Patients
• Finding Patients: Reason for Most Challenging
• Challenges in Retaining Patients
• Retaining Patients: Reason for Most Challenging
• Beliefs about Non-Traditional Data Collection

2. Recruitment Methods

• Primary Section Takeaways
• Use of Traditional vs Non-traditional
• Recruitment Methods
• Traditional Recruitment Channels
• Non-Traditional Recruitment Channels
• Identification of Patients
• Use of Patient Advocacy Group
• Study Assistance Provided by Patient Advocacy Group

3. Retention Practices

• Primary Section Takeaways
• Use of Remote Screening
• Remote Screening Methods
• Use of Remote Patient Visits
• Remote Patient Visits & Retention
• Prevalence of Flexible Protocol
• Data Collection Location
• Impact of Flexible Protocol
• Flexible Protocol & Retention
• Surrogate Markers
• Surrogate Markers & Retention
• Fight for Clinical Endpoints versus Settle for Surrogate Measures
• Use of In-Home Trial Support
• Impact of In-Home Trial Support
• In-Home Support & Retention
• Helpful In-Home Support Service
• In-Home Support & Dropout Rate
• Use of Support Services
• Source of Support Services
• CRO/3rd Party Support Services: Performance Expectations
• Respondent Comments on Performance

4. Study Data

• Time Dedicated to Recruitment & Retention Activities
• Activities Requiring Most Time
• Studies in Therapeutic Areas
• Pediatric Patients
• Adult Patients
• Use of Traditional Recruitment Methods
• Use of Non-Traditional Recruitment Methods
• Challenges in Finding Patients
• Biggest Challenge in Finding Patients
• Reason for Most Challenging (Finding Patients)
• Challenges in Retaining Patients
• Biggest Challenge in Retaining Patients
• Reason for Most Challenging (Retaining Patients)
• Traditional Recruitment Channels
• Most Effective Recruitment Channel - Traditional
• Non-Traditional Recruitment Channels
• Most Effective Recruitment Channel - Non-Traditional
• Remote Patient Visits & Retention
• Flexible Protocol & Retention
• Study Assistance Provided by Patient Advocacy Group
• Advisement by Patient Advocacy Group
• Unreasonable Clinical Endpoints
• Endpoint Data Submission
• Surrogate Markers & Retention
• Fight for Clinical Endpoints versus Settle for Surrogate Measures
• In-Home Support & Retention
• Indication for Most Recent Study
• Patient Type, Study Location, and CRO Type

5. Respondent Demographics

• Company Type
• R&D Spend
• CRO Size
• Respondent Location
• Job Level
• Job Title
• Primary Area of Responsibility
• Involvement in Recruitment & Retention
• Studies in Development Phases

For more information about this report visit https://www.researchandmarkets.com/r/bz63yd

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