UpdatedFebruary 20, 2020
Patient registries can be an important tool to centralize information about a rare disease community. AllStripes is a research platform that can complement registry efforts by providing the audit-trailed and research-ready data needed to push research forward.
A patient registry is a tool for collecting and storing information on patients with the same disease. The information is most often stored in a database. It can include any patient data relevant to the condition, for example symptoms, genotype, demographics, quality of life and treatments. Blood, tissues or other biological samples may also be collected as part of the registry and kept in a biorepository. A patient registry for a rare disease could include data on less than a dozen patients or thousands depending on the disease.
Patients often take a central role in patient registries for rare diseases. Registry data can be recorded directly by patients using online questionnaires or by healthcare professionals. Patient registries may be created, run, funded, and owned by patient organizations, academic institutions, government bodies or private pharmaceutical companies.
Registries can help inform future research, and in some cases the patient registry may be one of the only sources of information on a rare disease. Registry data can be used to support research into the genetic, molecular or physiological basis of the disease. The data may help researchers to develop hypotheses and design clinical trials.
Patient registries usually provide data on more patients than a clinical trial, and over a much longer time period. This makes them useful for providing evidence of long-term treatment effectiveness and safety. Sometimes a treatment is approved with the requirement that supplementary registry data is provided at a later date.
But there are also limitations to the data quality in most registries, and that’s where AllStripes comes in.
AllStripes is not a registry – we are a research platform that can complement the work your community it doing with a registry. Our medical data science platform generates research-ready, real-world evidence that can help accelerate research and push your advocacy efforts to the next level. Many of our partners run a traditional registry, but are also working with AllStripes because they recognize the limitations of a registry to move research forward.
How AllStripes differs from a registry:
We collect medical records on behalf of patients, removing all burden from patients to connect their health portal accounts or upload their files.
All records in the AllStripes platform are audit trailed, a requirement for FDA submissions. For registries and platforms that rely on patients to upload their records, there is no audit trail.
We digitize, structure and abstract information from the records, including handwritten notes from doctors that may contain key valuable insights. In many registries, the data is survey based, which is important but limited because you need the data from the actual medical record as proof for the FDA and for certain publications.
The de-identified data we abstract from the records can power faster, better drug research. We often hear from researchers that without AllStripes, they simply wouldn’t have the information they need to move forward or would have had to wait valuable months or years to collect it less efficiently.
The data in AllStripes is longitudinally updated. Data in a registry is often a cross-sectional snapshot in time. AllStripes looks at data from the entire medical history since pre-diagnosis and updates data each year to create a much more complete picture.
AllStripes is a research resource that can be used many times. Some registries are created for just one study – at AllStripes we can use the data from one patient community to power multiple research programs and drug programs. This is because AllStripes is independent and patient powered, and we don’t provide exclusive access to any one drug company or academic researcher. That would go against our mission of moving research forward, faster. We’ve also set up the platform so we can change the research questions and study protocol in a very flexible manner, unlike a normal registry where you’d have to redo the entire study if you have a new research question of interest.
We keep patients in the loop about the progress of their records and research, but we keep our communications limited to the research program. For needs like a newsletter to members, that is better done through your listserv or registry.
What we have in common with a registry:
We can send out research surveys to a community at various moments throughout the year, allowing you to add additional layers of insight to the platform.
Patients and advocacy organizations are our partners in the fight for better, faster rare disease research. Just as a registry without patients wouldn’t have purpose, AllStripes works closely with patients and communities to push for progress in rare disease research. Patients own their own data and can do whatever they want with it. They can download their records, delete their records or opt out at any time. Our model relies on the trust of patients and our mission is aligned with patient needs, so patients have the ultimate power in deciding what to do with their information
If you are interested in learning more about what AllStripes can do for your organization or community, please contact us at firstname.lastname@example.org