At its core, a patient registry is a collection of information about individuals.
They are typically created by research or academic institutions, or by individual research teams for the purpose of collecting observational data, which can then be used for a specific research agenda. These registries may be operated by a single institution or by a collaborative of multiple institutions or clinics.
Patient registries exist for a wide range of conditions, including neurodegenerative diseases, such as Alzheimer’s and other dementias. What’s more, they can be used for a number of purposes, including recruiting patients for clinical trials related to their illness; studying a particular population’s behavioral patterns and their association with disease development; or monitoring and improving the quality of healthcare.1
In current patient registries, most of the participants have already progressed to a later stage in their disease. However, individuals in the prodromal stages of a neurodegenerative disorder, such as Alzheimer’s, who would actually benefit from early intervention, may not be aware of the benefits of participating in a registry.
As it stands now, the number of registries for research that specifically looks at early intervention are minimal. Out of 31 ongoing registries in 2017 for Alzheimer’s, for example, only five were identified as recruiting individuals who are in the prodromal or early stages of the disease.2
So, how do you build more robust registries for neurodegenerative diseases and motivate people to register and update their registry information if they are either asymptomatic or in the early stages of the disease? The answer could be through the development of patient-powered registries in conjunction with a series of awareness campaigns to inform the public of early onset symptoms, high-risk environmental factors and family-linked genetic risk.
What are patient-powered registries?
Unlike traditional patient registries which are managed by academic institutions, in patient-powered registries, patients and family members – not researchers – manage or control the overall direction of the study, including (1) the collection of data, (2) the research agenda for the data, and (3) how the data will be shared and reported.
In essence, these registries are built from the bottom-up, enabling a peer-to-peer interaction and the open sharing of information. As a consequence, patients and their families are more likely to be motivated to participate in these types of registries, rather than the more traditional ones, precisely because they are patient centered. Additionally, these registries have been shown to do a better job at boosting clinical trial enrolment and the overall availability of data than traditional patient registries.3
Combining awareness with patient-powered registries
However, developing a patient-powered registry for a specific neurodegenerative disorder, alone, won’t be enough to attract asymptomatic patients who have a family history of the disease. To truly elicit the highest participation, patient-powered registries need to be used in conjunction with a continuous flow of awareness campaign strategies designed around the urgency of early detection.
In this regard, the peer-to-peer communication that is organically promoted through patient-powered registries – via such forms as email and social media – are the perfect medium to combine these awareness strategies. Here, participants can exchange messages and experiences, so that the importance of early detection in asymptomatic patients, genetic risks and environmental factors are maximised and eventually filtered down to specific targets of the message – namely prospective patients who are either asymptomatic or who exhibit early symptoms of the disease. To that end, there are three awareness campaigns that should be promoted:
- Communications around early onset symptoms and the importance of early diagnostic evaluations. This will help prospective patients realise that even though they are not experiencing symptoms, they are still potentially facing risk from environmental and genetic factors. Additional emphasis should be placed on the importance of early evaluation and diagnosis as powerful factors in treating neurodegenerative disorders.
- Communications discussing genetic and inherited risks, so that prospective participants understand that being asymptomatic does not ensure they will have no future risk of neurodegenerative diseases, and that early registry participation can help inform and open up new strategies of treatment, should that person have a genetic neurodegenerative disorder.
- Discussions around environmental risks for the purpose of encouraging registry participation in asymptomatic neurodegenerative disease sample populations.
Patient-powered registries, as opposed to traditional patient registries, offer a more robust recruitment strategy that will increase the participation of either asymptomatic neurodegenerative patients or those in the early stages of the disorder. However, to truly maximise this participation, the communication pathways of patient-powered registries need to be explored to strategically raise awareness of the benefits of early detection of neurodegenerative diseases and to highlight the fact that neurodegeneration usually occurs before detectable symptoms manifest.
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- Rubinstein Y. Patient Registries. [Accessed March 1, 2013]. http://rarediseases.info.nih.gov/PatientRegistry.aspx
- Cystic Fibrosis Foundation. Annual data report technical summary. Bethesda, 2018
- Pierson, Sheila K, et al., ACCELERATE: A Patient-Powered Natural History Study Design Enabling Clinical and Therapeutic Discoveries in a Rare Disorder, Cell Reports Medicine, 2020