Clinical Trial Toolkit
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights [...]
Going on a clinical trial can be a life changing decision, and from the outside it can be very difficult to understand how a trial is run, what the risks are, and what the potential benefits might be. If you are considering a clinical trial, talk to your medical team and discuss it with them. They can help!
To help you understand clinical trials better, we have a number of different resources on this website that may be useful. These include
Many patients talk about the clinical trial experience at our town meetings for patients. These videos have been selected for your viewing for their reference to clinical trials as a treatment option.
One of the big issues around clinical trials is “awareness” or, what trial is available, where is it, what is the contact information, is it open, what is the eligibility criteria, etc. It is well-known that the “main” clinical trial finder at ClinicalTrials.gov is difficult to navigate for the average patient.
Currently, there are other trial finders on other websites that may be more patient friendly and easy-to-use. Some even offer a helpline or specialist navigators who can help you through the process.
Insurance companies generally will cover what is considered the standard of care for a disease. However, if the treatment is experimental or investigational, a patient may not receive insurance coverage. Sometimes hospitals, research centers and pharmaceutical companies will cover the cost of treatment in a clinical trial. But often, trials require additional tests, doctor visits, travel, childcare costs and other expenses that are covered neither by the trial sponsors or the patient’s insurance. In these cases, patients are responsible for the costs. There are organizations that provide help for these costs though and we have outlined them on this resource page.
We are helping to promote a number of clinical trials, this page provides details of some of the recent initiatives that we are involved with.