Establish Clinical Sites

Tips for Success

Even though it is clear that establishing a Center of Excellence Network is important for clinical care and research efforts, it may seem like an overwhelming task. If your disease is newly discovered or very rare, there may not be many identified patients and they may be scattered across the globe. Learning how other rare disease patient groups have established their own Network can provide you with the inspiration you need to move forward. 

  • Ask members of your Medical/Scientific Advisory Board whether they are willing to establish a Center of Excellence at their associated university medical center. 
  • Find  a university or tertiary care medical center or centers that have been caring for at least a few patients with your disease.
    • Contact 1 or more of the clinicians who have seen the patients to determine whether they would be willing to be involved in a Center of Excellence for your disease.
    •  If specialists for your disease tend to be in one main department, approach the department chair.
    • Reach out to the university medical center administration to determine whether their center has a framework for establishing a Center of Excellence. 
  • Find a university or tertiary care medical center that already has established multidisciplinary clinics for other diseases. 
    • Determine whether there are any open time slots in the space used for the multidisciplinary clinic that can be used to establish a multidisciplinary clinic for your disease.
    • Contact relevant specialists at the center to determine whether they would be willing to participate in a multidisciplinary clinic for your disease.
    • Start small, maybe offering 1 morning or afternoon a month, and grow as needed.
    • Grow the Network in other areas of the country using the same strategy.
  • Provide families with resources that can help with travel costs or consider partnering with other organizations or a donor to more directly provide assistance.
  • Consider establishing a Data Coordination Center to which all data are sent, maintained, and analyzed as the number of clinical centers in your Network grows.
  • Offer research grants to help support the Principal Investigator and Clinical Trial coordinator when a clinical trial begins. Partnering with other, larger organizations or philanthropic organizations may make this more feasible.
  • Read Centers of excellence in healthcare institutions: what they are and how to assemble them (2017), a published medical article detailing 1 university medical center’s framework for establishing multidisciplinary clinics.