Sickle Cell Disease Research Network

Facilitating Sickle Cell Disease Research to Improve Clinical Outcomes

Clinical Trials Resource Library

Welcome to the ASH Research Collaborative Clinical Trials Resource Library

Your trusted resource for clinical research education. Curated for the SCD Community by members of the ASH RC National Community Advisory Board.

Disclaimer: The clinical research resources that were developed externally are provided for reference. Please note that the ASH Research Collaborative does not endorse, nor is it responsible for, the content of these resources.

Resources

Clinical Trials 101: The Basics

Welcome to the “Clinical Trials 101: The Basics” resource library. This page provides essential resources to help you learn about clinical trials, covering key concepts and important information to aid your understanding and decision-making process.

What is Medical Research?

December 27, 2016, U.S. Department of Health and Human Services

This video provides basic information about scientific research, the goals of research, and discusses how clinical research differs from medical care.

Deciding to Participate in Clinical Trials

December 27, 2016, U.S. Department of Health and Human Services

This video discusses types of human research with a focus on clinical trials and explains common terms that potential participants should know.

What is Randomization?

September 27, 2021, U.S. Department of Health and Human Services

This video explains the concept of randomization in clinical studies.

The Clinical Trial Journey

June 5, 2021, U.S. Department of Health and Human Services

This video explains each phase of the clinical trial journey.

Clinical Trials: Myths and Facts

October 1, 2021, American Kidney Fund: Fighting On All Fronts

This PDF shares common clinical trials myths and facts.

Understanding Ethical Standards in Research

Welcome to the “Understanding Ethical Standards in Research” resource library. This page provides essential resources to help you learn about the ethical principles and standards that protect participants in research, ensuring their safety, privacy, and rights.

Privacy in Research

February 5, 2025, ASH Research Collaborative

This video explains how your data is protected in research.

More Information: Privacy in Research (PDF)

The Power of Choice

February 5, 2025, ASH Research Collaborative

This video explains that your participation in research is entirely voluntary and your choice.

More Information: The Power of Choice (PDF)

How IRBs Protect Human Research Participants

October 9, 2018, U.S. Department of Health and Human Services

This video describes what an institutional review board (IRB) is and how IRBs serve to protect people who participate in research.

Protecting Your Privacy in Human Research

March 29, 2020, U.S. Department of Health and Human Services

This video discusses why privacy is important for research volunteers and how researchers protect their privacy and the information they provide.

Informed Consent for Research: What to Expect

April 17, 2020, U.S. Department of Health and Human Services

This video provides basic information about informed consent and what information you’ll get to help you decide whether to volunteer for a research study.

Participant’s Bill of Rights

February 24, 2019, The Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard

This video explains each phase of the clinical trial journey.

Exploring Clinical Trials: Insights, Stories, & Resources

Welcome to the “Exploring Clinical Trials: Insights, Stories, and Resources” resource library. This page offers various materials to provide valuable perspectives on participating in clinical trials. Explore personal stories, expert insights, and practical resources to guide your journey in understanding and considering clinical trial participation.

Exploring Clinical Trials

February 5, 2025, ASH Research Collaborative

This video explains the importance of participating in clinical trials for sickle cell disease.

More Information: Why Join Clinical Trials for Sickle Cell Disease (PDF)

Why Participate in Clinical Trials for SCD?

April 17, 2020, ASH Research Collaborative

This PDF explains the importance of participating in clinical trials for sickle cell disease.

Questions to Ask Before Volunteering in Clinical Trials

December 27, 2016, U.S. Department of Health and Human Services

This video emphasizes that participating in research is voluntary and encourages potential participants to ask questions and get the information they need to decide whether to participate.

Researcher Story: Why Participate in Clinical Research?

April 10, 2012, National Institutes of Health

In this video, researchers and clinical trial participants explain what it’s like to volunteer for a trial and how it promotes medical advances.

Volunteer Story: Juliana (Sickle Cell)

August 23, 2016, National Institutes of Health

Juliana Ejedoghaobi was born with sickle cell anemia, a condition in which the body’s red blood cells are sickle shaped. It slows or blocks blood flow to parts of the body, causing intense pain called “crisis.” Hear Juliana tell her story about how participating in a clinical trial saved her life.

Volunteer Story: Nicholas (Sickle Cell Disease)

September 2, 2011, National Heart, Lung, and Blood Institute

Nicholas was diagnosed with sickle cell disease soon after he was born, and he overcame numerous health obstacles throughout his childhood. Watch this video to hear Nicholas and his mother, Bridget, discuss how Nicholas manages his disease, allowing him to live a fulfilling life as a teenager.

Clinical Trials Search

National Institutes of Health, National Library of Medicine, National Center for Biotechnology Information

This website allows you to search for current and upcoming clinical trials.

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Clinical Trials Resource Library

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