If you happened to miss our joint webinar with Aparito and Pulse Infoframe back in July, we’ve made it easy to catch up on all the action!

Hear from all three speakers from our “Building your patient group data to drive research” webinar to learn their key takeaways for patient groups who are looking to start a data registry.

Data continues to be at the forefront of science and medical research, especially when it comes to drug development and its impact on patient health. Knowing the unique role that patient groups can play in coordinating the appropriate research needed to fully understand the patient experience is crucial to accelerating change.

Hear what our experts had to say below!

Dan Lewi: Co-founder of CATS Foundation and Head of Business Development at Aparito

Dan was the first to speak on our “Building your patient group data to drive research” webinar. Dan established a patient registry for his patient group organisation, CATS Foundation, and walked us through his experience with data collection.

View his key insights and pro tips for starting a data registry!

Key insights
  • If patient groups increase awareness of their rare disease, then a rare disease’s patient numbers increase. An increase in patient numbers results in an increase in data, which then is able to be collected in a registry and used to bring about actionable change.
  • It’s better for patient groups to stick together and work collaboratively than fund research projects independently.
  • To get pharma and researchers interested in your rare disease and its need for treatment, you need to show the patient numbers. The numbers speak for themselves, which can hurt to hear when you and/or your child is the one who is affected. After all, that’s the only number you need to know. Unfortunately, you need to show how many patients are affected and who a treatment would benefit through data if pharma and researchers were to get involved.
  • Bring key stakeholders together to accelerate change for your rare disease. “Teamwork makes the dream work” and every rare disease stakeholder finds data of immense value, whether they’re a patient group, researcher, doctor or academic.
  • Data registries can help bring families together and introduce them to people affected by the same rare condition.
  • Always remember that you’re collecting data for people. No data is ever given or collected in vain. The data you collect can and will make a difference in the lives of those living with your rare disease now and in the future.
  • “Someone needs to do the hard work.” Data won’t just appear, you need to go out and collect it by making it as easy as possible for patients to provide their information into your registry.
  • Data registries can illustrate your rare disease’s progression through accurate information given by the people who are impacted by the condition day in and day out.
  • Data is your asset as a patient group. Your data isn’t restricted by the NHS or hidden behind any firewalls or a pharma company. Your data is held by you and any good that comes from it will be reinvested back into your patient group services for the betterment of your community.
Pro Tips

Dan highly recommends asking yourself the following four questions when looking to set up a patient group registry:

  • What do you want to achieve by creating a patient data registry?
  • What do you want your data registry to collect?
  • How do you want your data registry to collect it?
  • How much data do you want your registry to keep?

Dan also recommends collecting the following data from your patient group to show the progression of your rare disease:

  • Personal data
  • Demographics (Gender, Age, Country, etc.)
  • Symptoms of your group’s disease
  • Family history (to help identify carriers of the disease)
  • Information about when and where the patient’s diagnosis was made
  • Information about the gene type or gene mutation that occurred
  • Patient’s consent (Vital for any registry!)

Fastest way to get started?

  • Find a technology partner who wants to make a difference in the rare disease space and ask to be provided with the technology needed to build an online registry.

Elin Haf Davies : CEO, Aparito

Femida Gwadry-Sridhar: CEO, Pulse Infoframe

Next to speak were Elin of Aparito and Femida of Pulse Infoframe. Elin and Femida spoke about the importance of a collaborative approach when capturing data and highlighted how data collection can drive change for rare diseases. They discussed the different types of data available to collect and how best to collect them. View their key insights below!

Key insights
  • When establishing a data registry, you need to opt for a solution that’s going to allow you to grow and change as you go. Understand your patient group’s data requirements and search for a technology solution that supports them.
  • Data has traditionally been captured in a hospital or clinical trial setting, but now with the advent of digital devices patients are able to provide data from the comfort of their own home.
  • The more patient data you collect, the more you create a wider encompassing picture of what it’s like to live with your rare disease. You can capture and illustrate your patient group’s personal experience, clinical understanding and natural history all through data.
  • Patient data registries can be used to design clinical trials, regulatory approval processes and reimbursement for a specific rare disease treatment when the data collected is well structured, has a clear purpose and is captured in a way that makes sense to those who want to use it.
  • Data can come from electronic health records and take the form of wearable data, clinical data, genomic data, lab data and patient reported outcome data. Each type of data collected provides a piece of the puzzle to help you and others better understand the patient experience and rare disease itself.
  • Wearables increase the accuracy of the data collection process and make providing information and feedback easier for patients. Wearables collect a patient’s contact details, home address, location, demographics, family and genetic history all in real-time!
  • Data registries can illustrate a patient’s preferences and own perception of the impact their rare disease has on themselves, their family and/or his or her carers.
  • When designing a data registry, ask for feedback from your patient group. Your community must understand that you’re not just taking data, but you’re providing information back to them in an effort to improve their overall quality of life. Nurture the community that you’re involved in to help the data grow!
  • Registries are extremely powerful tools, especially when it comes to informing the structure of rare disease clinical trials, regulation, policy and reimbursement. When collecting data, imagine how a physician or clinician would approach it. Structure your data in a way that makes sense to them so it has meaning. You want your data to fit into regulatory guidelines, but also convey the patient voice.
  • Data registries help to unlock many of the unknowns surrounding rare disease and rare disease patients. By collecting data, you are building knowledge!
  • A collective data source is the strongest voice a patient group can have!
  • The best way to move your rare disease agenda forward is through collaboration. Work together with stakeholders to share your knowledge and skills with them. Collaboration is the cornerstone of success!

Rather learn these data registry tips and tricks from the experts themselves? Watch the recording of our “Building your patient group data to drive research” webinar now!

“Building your patient group data to drive research” webinar recap

by Blayne Baker time to read: 7 min
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