It’s estimated that 55% of chronic alopecia areata patients will have persistent multifocal relapsing and remitting disease if they do not receive systematic treatment.

However, there is also very little evidence that active treatment can alter the natural progression of the disease. But it may be argued that a large part of this lack of evidence is related to the lack of research and consensus regarding alopecia and alopecia treatment.

One way to close this gap is to create a global registry of alopecia treatment and outcomes. Before doing so, it’s imperative to identify what type of data and information should be shared on these registries in order to make it useful.

The AAAF participated in a 3-round eDelphi process to address exactly these questions and below is a summary of what we found. Keep reading to learn about the importance of creating a global network of alopecia registries and what needs to be included.

What’s Missing from Alopecia Treatment

There are a number of treatments currently available to individuals with AA. These include topical, intralesional, and systemic agents.

You can read about the road map for diagnosis and the Australian expert consensus statement here. However, there is still much to learn about the optimal treatment algorithm and each treatment’s r use, effectiveness, and tolerability. 

One step toward alleviating these gaps in understanding is the creation of a place where data regarding treatment and outcomes can be shared and reviewed by experts around the world. 

Toward a Global Registry of Alopecia Treatment and Outcomes

A patient registry is “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).” 

In short, a registry is a place where standardized information about a common condition or experience can be gathered. That data may be used for any number of reasons, including:

• Recruitment for clinical trials
• Developing therapeutics
• Understanding the relationship between behaviour patterns and disease development
• Developing research hypotheses
• Improving health care
• Monitoring outcomes
• Developing best practices in care and treatment

In terms of a global network of AA registries, the biggest benefit is related to these final two points: monitoring outcomes and developing best practices for treatment. In fact, the eDelphi exercise emphasized that a global network of patient registries would help “redress the paucity of comparable, real-world data regarding the effectiveness and safety of existing and emerging therapies for alopecia areata.” 

But if a global network of patient registries is created, what are the most important components of that registry? That is, what standardized information should be included in order to make the registry useful to researchers? 

What’s Required of an Alopecia Registry?

The global eDelphi exercise was a 3-round process that culminated in a face-to-face meeting at the World Congress of Dermatology. It involved 66 expert physicians, patient organizations, scientists, representatives of the pharmaceutical industry, and pharmacoeconomic experts. The purpose was to identify what data should be captured in a global network of alopecia areata patient registries, especially in terms of the safety and effectiveness of existing and emerging therapies.

The exercise resulted in the identification of 92 core data items across 25 domains. There were an additional 20 noncore data items identified, but these would be used to harmonize data in the centers that wanted to record them. You can learn more about the core and noncore items here.

Identifying these standardized items was the first step to creating a global network of registries that could help solve the evidence gap in alopecia treatment and outcomes. How? Because with standardisation, experts can access comprehensive and comparable data sets as well as real-world evidence from existing therapies.

Help Us Create a Global Registry

There exist large gaps in evidence regarding alopecia treatment and outcomes. But by creating a global network of AA patient registries, we can begin to close that gap. 

Of course, creating a global network of that magnitude takes planning. The first step to the planning was this eDelphi process to identify what data should be maintained in the registry.

And now that we’re one step closer, we need your help. Consider donating to the AAAF to help fund our mission to improve the healthcare and quality of life for individuals with AA.