Expert Insights

Expert Insights

Key Caregivers in Rare Disease Trials

Key Caregivers in Rare Disease Trials
24 July 2019

Supporting patients with rare and orphan diseases during clinical trials to address their conditions is no different. Executing trials and obtaining quality, reliable data requires engagement of not just patients but their entire ecosystems, especially for rare, neurological, and other challenging conditions. 

Rare diseases, frequently multidisciplinary in nature, often affect many aspects of the body. Patients are seeking more information, may be scared, confused. They may feel like a burden to their families and a source of anxiety and depression. Their participation in a clinical trial may involve traveling long distances to find a trial to address their needs and likely requires a large commitment to participate.

Often there are one or more people supporting them who are also taking on this commitment—bringing them to appointments, administering medications, spending time with them, and talking with researchers about their diseases. In rare disease clinical trials, caregivers may become fierce advocates for loved ones. Seeing the patient every day (or close to it) they act, in effect, as care managers, nurses, therapists, financial support. Often they may be the ones seeking clinical trials and next best steps – especially if the patient is cognitively disabled. For this reason, and many more, it’s important to consider not only the patient but also caregivers with varying levels of engagement, in designing and operationalizing clinical trials. Caring for the caregiver is a necessary component of successful drug development. 

Following are just a few, key caregiver roles and the benefits drug developers can obtain from including these important communities in clinical trial design and implementation.

  • Observers - If supported and taught how to be an observer, caregivers may provide valuable information otherwise not gleaned about the patient’s status and/or be first to notice changes. They often pick up on subtle differences in a patient’s mood, behavior, and even physicality that the patient may not identify, recall, or be able to articulate due to their disease state.
  • Communicators - Caregivers are often capable of interpreting medical terminology and communicating with patients in familiar language that they may be more likely to understand and follow.
  • Advisors - They may offer critical insights into the disease experience, based on their close observation of the patient, to enhance the trial experience, thereby reducing drop-out rates and increasing protocol compliance. As “care managers,” “nurses,” “therapists,” and often, financial support, they can provide greater insights into the patient, what he/she is most likely to do or not do, to positively impact the completion of the trial.
  • Participators - Caregiver performance and participation is often a requirement in clinical trials – from completing questionnaires and participating in interviews, to administering medicine, reporting on progress, etc. It may be legally necessary to ascertain their legal guardian status or obtain the consent of the caregiver to provide clinical trial data.
  • Influencers - They can be important and trusted influencers in patients’ lives, often the ones to seek out clinical trial opportunities and advocate for patients, as well as to encourage them to comply with protocols and take positive steps.

How can you better tap into the important role caregivers play in your clinical trial? Listen to our recent webinar on the Key Role of Caregivers in Clinical Trials or contact us for more. 

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