Digital patient registry – Patient Groups Unite

Patient groups unite for digital registries

Digital patient registry: Patient registries have always provided an important way for patient groups to demonstrate the scale of need, support research participant recruitment, and improve treatment and overall experience. 

Digital technologies are making real-time evaluation of patients’ real-world experience, more practical and effective.

Rare disease registry

Registries have always been key in rare diseases. Identifying how many patients there are, where they are, and the impact of their disease, has always strengthened the pharmacoeconomic case for resources. 

Now, software exists to make registries easier for even smaller patient groups. Taking a digital approach also enables patients to feed in real-time, real-world evidence on everything from symptoms to treatment impact and effectiveness.

eHealth has also enabled greater collaboration.  For example, in the United States, the Rare Diseases Clinical Research Network (RDCRN), has a contact registry to help individual patients to:

  • Firstly, search the site for their rare disease, and the patient organisations supporting research
  • Secondly, identify opportunities to take part in studies that may lead to improved care and outcomes
  • Following on, choose to share the data they contribute with study doctors, research staff and patient organisations
  • And lastly, receive information on their disease, and the activities of their patient organisation.
Finding the right patient organisation

The Network works through more than 20 research groups. Each of these groups involves patient organisations in supporting and guiding research.  

By clicking on the name of each research group, you can see a profile of all the patient organisations contributing to the research effort.  

For example, the record for the ‘Dystonia Coalition’ brings up profiles of 15 patient organisations across the world supporting the Network’s research.  You can also read profiles of dystonia studies currently recruiting participants through the network.

From a patient perspective, it’s a great way to pull together in one place key patient organisations for each rare disease area. Each profile links directly to the patient organisation.

Joining from the patient organisation

In turn, the patient organisations’ own websites encourage their members to contribute to their research. 

For example, the American Charcot-Marie-Tooth Association (CMTA) includes a section encouraging patients to join the Network. They make this case for joining the registry to address the progressive disease affecting peripheral nerves:

“The success of upcoming clinical trials will largely depend on how much we know about the natural history of CMT – how different types of CMT progress over time, and whether novel medications are slowing the course of the disease.  So be sure to join.”   Charcot-Marie-Tooth Association

The Association has joined with other patient organisations across the world as part of the “Inherited Neuropathies Consortium” which also includes:

  • The Muscular Dystrophy Association
  • CMT UK
  • Treat NMD (the European neuromuscular network).
Melonoma UK digital patient registry

Patient organisations are also embracing digital technology for their own registries. Tracking the patient experience over time as part of a patient registry requires a very convenient and easy format. The patient group Melonoma UK developed a digital patient registry app with research company Vitaccess.

The digital patient registry app aims to:

  • Collect demographic and epidemiological data across all stages of the disease
  • Identify prevalence and sub-groups
  • Identify the impact of the disease and its treatments on quality of life
  • Gain insight from people living with melanoma.

The pilot stage will collect data in the UK through the app, but the team plans to extend data collection globally.

The app is gaining a high profile at a number of specialist events during the Spring, including the Medical Informatics Europe conference in Sweden in April, and in May the conference for the International Society for Pharmacoeconomics and Outcomes Research (ISPOR).

So, as decision-makers increasingly look to real-world evidence and patient-reported outcome measures, patient groups are central to gathering this data, enabled by digital technologies.  


Find out more about the Rare Diseases Clinical Research Network registry…

Click here

Find out more about the patient organisations supporting the Rare Diseases Clinical Research Network registry…

Click here

Read a review of the registry app by the patient organisation Melonoma UK on…

Click here


Leave a Reply

Your email address will not be published.