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How to Build Strong Relationships with Centers of Excellence

Centers of excellence concentrate knowledge and expertise on a topic. By doing so, they offer a rich source of information and insight into their chosen discipline or research area.

By connecting with centers of excellence, pharmaceutical researchers and healthcare leaders can boost their research and development efforts, collaborate on complex problems and produce better results for rare disease patients.

The Perspective of Centers of Excellence

Centers of excellence focus on concentrating knowledge and expertise in order to achieve goals that might otherwise slip under the radar in the day-to-day work of their respective industries. Consequently, they tend to pair a deep commitment to advancing knowledge with a narrow focus on a topic or set of topics.

Three years into the COVID-19 pandemic, companies in nearly every industry are leaning more heavily on centers of excellence as their priorities shift. New emphasis on long-term sustainability and deeper social trends has led to new interest in the research and efforts of centers of excellence, says Mark Raskino, distinguished VP analyst and fellow at Gartner.

These centers have a particular role to play in rare disease research and treatment. By pooling resources on rare diseases, they help pharmaceutical researchers, healthcare providers and other rare disease community members improve diagnosis, treatment and research options.

Leading the charge in this area are the NORD Rare Disease centers of excellence, a “first-of-its-kind network of US medical institutions dedicated to advancing the state of diagnosis, treatment, and research for all rare diseases,” according to NORD’s website. The NORD RD centers focus on sharing best practices and boosting communication and collaboration to address unmet needs in the world of rare diseases.

Pharmaceutical researchers and other parties can launch a relationship on the right foot by understanding their perspective. Recognizing the deep yet narrow commitment of centers of excellence allows interested collaborators to narrow their own search to those centers most likely to help them answer their questions, provide relevant resources or pursue essential research questions.

Group of professionals sitting in circle; centers of excellence concept

Building Shared Goals

Do you need to work with a center of excellence? Gartner’s Chris Pemberton suggests that a collaboration may be the right fit if:

  • Your organization or team needs access to specific capabilities or specialized knowledge.
  • The knowledge you need is otherwise difficult to acquire.
  • The center of excellence provides knowledge or capabilities essential to your organizational or team goals.
  • The project needs central oversight from a highly qualified source.

Centers of excellence tend to form around a specific shared goal and topic area. The one for physician information program led by the National Institute on Drug Abuse (NIDA) connected NIDA with eight medical schools throughout the United States with the goal of improving curriculum resources for addiction science.

In the realm of rare diseases, centers of excellence increasingly include information access and collaboration among their core goals. For example, the FDA’s Center for Drug Evaluation and Research (CDER) launched the Accelerating Rare Disease Cures (ARC) program to address key challenges faced by nearly all rare disease researchers, writes Rachel L. Sher, life sciences and FDA partner at Manatt Health.

The ARC program’s goals include:

  • Improving regulatory science as it affects clinical trial design and data interpretation.
  • Refining regulatory policy for rare disease research.
  • Enhancing communication and coordination for rare disease researchers, including medical product centers.
  • Building a stronger network for outreach and coordination for all stakeholders in rare disease diagnosis, treatment and research.

The ARC program will ultimately function less as a center of excellence than as an umbrella organization that facilitates communication among centers of excellence and other stakeholders, predicts Informa’s Derrick Gingery. Yet the ARC program’s four goals are shared by a number of centers of excellence and other parties engaged in rare disease research. They provide a starting point from which to compare notes and identify shared points of interest, knowledge and effort.

Close-up of woman working on laptop; centers of excellence concept

Boosting Communication With Centers of Excellence

One key aspect of improving communication with centers of excellence is improving the generation and sharing of scientific evidence related to rare diseases.

As with any area of research, orphan drug development may be hindered by limited data or lack of access to available data. Because data on rare diseases tends to be scarcer by definition, these limits can hinder efforts to create effective rare disease treatments.

Improving evidence generation and interoperability can boost these efforts, write Caroline Pearson, Lindsey Schapiro and Steven D. Pearson in a 2022 ICER report. Improving communication and data sharing can also strengthen the relationships among pharmaceutical researchers, treatment providers and centers of excellence.

One way to improve communication with a center of excellence is through a single integrated platform for data collection, standardization and sharing. The right digital platform incorporates robust security measures while also allowing center of excellence members, pharmaceutical researchers, providers, payers and other engaged parties to collaborate and share information. The platform allows pharma teams to show real-life examples and evidence of centers of excellence participants, who can then analyze this information according to their research, expertise and goals.

Expansion of centers of excellence for rare disease research on the international stage offers hope and support as well. While rare disease research remains under-supported in India, for example, the recent creation of eight new rare-disease-related centers of excellence in the county is changing the landscape of orphan drug research there — and offering resources to research teams both in India and in other countries, writes Sayanta Thakur in a 2022 article in Perspectives in Clinical Research.

Centers of excellence offer an essential source of information, knowledge and expertise on rare diseases. To foster relationships with them, pharmaceutical researchers and others involved in rare disease treatment and research can seek out centers of excellence whose interests or goals align with their needs.

While centers of excellence relationships aren’t the answer to every question, this growing network of deep thought and experience can provide essential communication that boosts efforts toward finding effective treatments for rare and ultra-rare diseases.

Images by: thelivephotos/©, lacheev/©, Alizée Baudez