Patient advocacy groups: The link between patients and clinical trials.

Patient advocacy groups (PAGs) play an important role in both patient and caregiver journeys. Often dedicated to educating, advocating, and providing support services for a particular condition, these groups are a great link between clinical trial recruitment and potential participants. So, when it comes to clinical trials, having study information shared by a PAG not only boosts awareness of a trial but adds a layer of credibility and validity.

To give you some examples of PAGs known for educating the public on the importance of clinical trials and supplying details on ongoing trials, we’ve selected two organizations to spotlight: one large group that supports a chronic condition and one small group that helps children with a rare disease.

Alzheimer’s Association.

The Alzheimer’s Association is one of the largest nonprofit funders of Alzheimer’s research. They strongly encourage participating in clinical trials because “without clinical trials, there can be no better treatments, no prevention and no cure for Alzheimer’s disease.” And when you go to their homepage, the word “research” is highlighted front and center, with links to various additional resources, including an education center about clinical trials that helps answer frequently asked questions, such as:

  • What are clinical trials?
  • How do clinical trials work?
  • Why participate in a clinical trial?

Providing education and resources about participating in research through a trusted resource like the Alzheimer’s Association can offer reassurance that clinical trials should be considered as a valid treatment option.

Calliope Joy Foundation (CJF).

CJF is an organization that supports children with leukodystrophy (a term used to describe a group of genetic disorders that affect the brain and spine) and their families. Because leukodystrophy is so rare, families who connect with the foundation are known on a personal level. Not all patient advocacy organizations offer this type of powerful one-on-one support for families. That’s why when there’s a new family receiving resources, referrals, and access to a variety of other support systems, CJF has a better opportunity to help potential research participants and their caregivers feel more comfortable with the idea of joining a clinical trial.

Depending on the study type, indication, patient population, and other factors, advocacy outreach may be an important part of Praxis’ recruitment offering. Reach out to learn more about how Praxis can support your next clinical trial.

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