Helping patients and caregivers understand their options for clinical trials – and what to consider when making a decision on whether or not to enroll –  is an important service that advocacy groups provide their communities. Here are some helpful resources you can share.

Global Genes is hosting the RARE Drug Development Symposium June 8-10, 2022 in Philadelphia, PA, bringing together rare disease advocacy leaders and researchers to identify barriers to research, envision solutions, and accelerate progress for our communities. 

Register to Attend

Don’t miss the upcoming webinar, Getting Your Community Ready for Clinical Trials with TSC Alliance on May 20, 2022 at 10:00 AM ET where we’ll be discussing the vital role advocacy leaders play in educating their communities about research opportunities and how you can provide information they need to make good decisions regarding participation. In this webinar, you will learn:

  • How to decide which researchers to support – and why
  • What questions to ask researchers and clinicians
  • Ways to provide opportunities to hear from scientists
  • Resources that can help your community understand new treatment options

Register for Webinar

RESOURCES: What it’s Like to Participate in a Clinical Trial 

From Molecules to Medicine: Clinical Research

This toolkit explains what a trial is, phases, who’s involved in conducting trials, and how you can participate. 

Participating in a Clinical Trial: A Step-by-Step Guide for Rare Disease Patients and Families

This resource explains the process of participating in a trial from start to finish.

Ciscrp Webinar Series: Navigating Rare Disease and Clinical Research

In this webinar series. patients and organization leaders describe clinical trial protocols, what it’s like to participate, and how to prepare for when the clinical trial ends. 

Clinical Research Participation Basics Roadmap

This interactive map takes you through the basics of how to find participate and leave a clinical trial

Where to Find Clinical Studies

How to Get Involved in Research

Information from the NIH on how to find studies, registries and places where you can donate tissue samples. 

Evaluating Your Options

Courageous Parents Network (CPN): Evaluating the Clinical Trial Option

digital resource offering the perspective of a principal investigator, study coordinator, patient advocate and families who have considered and/or participated in a trial. The unit includes videos, podcasts and blogs. Three downloadable guides and a Guided Pathway, a curated learning experience, are available in English and Spanish. CPN also offers a list of questions to ask about clinical trials.

Informed Consent

Describes the informed consent process as it applies to research and beyond.

Informed Consent for Clinical Trials

This FDA document outlines the information that researchers are obligated to provide to participants before enrolling in a clinical trial

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