Often we talk about patients, but sometimes they can’t speak for themselves. Can we recruit caregivers?
The answer is a resounding Yes. For many diseases, the patients are children, and we’ll speak with their parents (most often the mom). This is the case in such conditions as Spinal Muscular Atrophy, Autism, ADHD, and Cerebral Palsy, for example. Other diseases are disabling, so even if the patient is an adult, we’ll often speak with a caregiver, such as a spouse, parent, or adult child of the patient. Some of these conditions include ALS, Parkinson’s, Alzheimer’s, and epilepsy.
By caregiver, we mean unpaid people, usually family members, who help the patient. Each study may have its own definition of exactly who them mean by caregiver. Often, they want people who may accompany the patient to doctor visits, and who might have input into the treatment decisions. That makes sense, since many of the studies we recruit for are looking for opinions on new treatments.
When you are requesting a bid, please let us know if you specifically want only patients, or caregivers, or both. For some health conditions, where we know patients may have a hard time completing a study by themselves, we’ll suggest including caregivers. And in the counts we provide on our website, we list the panel sizes for both patients and caregivers. Go to our website, rarepatientvoice.com, go to the For Researcher tab, and select Patient/Caregiver Panels.