Develop Programs To Speed Diagnosis

Raising Awareness

When a new therapy is approved that can change the lives of your disease community, it will be important that everyone who can benefit from the therapy is diagnosed. Sometimes therapies will only benefit a subpopulation of your patient community, so it can also be important that doctors understand how to identify the patients who are eligible for the newly approved therapy. 

• Clinical network: If there is an established clinical network or centers of excellence for your disease, and not all of the centers participated in the clinical trial of the therapy, make certain the medical staff are using the most current diagnostic criteria or tests. 
  • Share current diagnostic criteria or testing strategies with the doctors and other medical professionals in your clinical network.
  • Consider holding a webinar to discuss any recent changes.
  • Rely on your Scientific/Medical Advisory Board, doctors, and medical staff who participated in the clinical trials to help communicate diagnostic steps.
  • Highlight extra tests or diagnostic criteria that may be needed to identify the correct subpopulation of patients who may benefit from the therapy, if applicable.
• Present at conferences: Reaching out beyond your clinical network is important because many times, especially with rare diseases, a patient or their family will only find your network after a diagnosis or when the diagnosis is strongly suspected. Presenting and exhibiting at appropriate conferences may be one way to reach medical professionals outside your clinical network. 
  • If you hold a conference that includes attendance by the medical professional community, you may wish to hold a session devoted to the newly approved therapy and how to diagnose those that can benefit.
    • Provide copies of published diagnostic criteria or links to the article if available freely online or your website.
    • Direct to the diagnostic criteria posted on your website.
    • Consider holding a separate session for patients and families on the newly approved therapy and also the steps to diagnosis. 
      • Although those in attendance may already be diagnosed, they may also be involved in social media groups where people searching for a diagnosis may learn about your disease.
      • There may be patients and families attending your conference who have not had a diagnosis confirmed or were clinically diagnosed prior to the availability of more advanced or specific diagnostic tests. 
      • If the therapy only benefits a subpopulation of patients, it is important that your patient community knows how the subpopulation is identified.
    • Create an exhibit (table/booth) that focuses on diagnosis of your disease and set it up near the registration table or near the exhibit for the newly approved therapy.
      • Have printed material available.
      • Staff with members of your group/staff who are knowledgeable about the diagnostic criteria and steps.
      • Consider having designated times when one or more of your medical advisors or doctors from your clinical network will be available to answer questions.  
  • Medical professional societies usually hold annual national and regional conferences. You can target the conferences of specialist and primary care providers that are involved in the diagnosis of your patient population.
    • Ask your medical advisors to develop a list of medical professional meetings to explore as opportunities for outreach.
    • Present a session on the diagnostic criteria and testing for your disease while also updating on the newly approved therapy.
      • Some conferences allow groups and patients to present, while others may only allow medical professionals. 
      • You may wish to ask a member of your Scientific/Medical Advisory Board or clinical network if they are willing to make the presentation.
    • Exhibit at the conference:
      • You may wish to coordinate exhibiting with the manufacturer of the newly approved therapy, for example, having the exhibits in close proximity. 
      • Many medical professional societies provide discounts to patient organizations wishing to exhibit at their conference.
      • Provide copies of published diagnostic criteria or links to the article if available freely online or your website.
      • Direct to the diagnostic criteria posted on your website.
      • Staff with members of your group who are knowledgeable about the diagnostic criteria and steps.
      • Consider having special times when one or more of your medical advisors or doctors from your clinical network will be at the exhibit to answer questions. 
    • Remember to check the websites of the conferences early for the processes and deadlines to submit applications to present orally or have an exhibit.
  • Larger patient/disease groups and umbrella groups may have conferences attended by medical professionals who will be on the front lines of diagnosing your disease. You may wish to reach out to these groups to determine which of their conferences would provide an opportunity to present or exhibit. 
    • Check in with the National Organization for Rare Disorders (NORD ) and Global Genes , two of the leading, U.S.-based umbrella organizations for the rare disease communities.
    • Reach out to larger groups that include your disease.
• Update diagnostic information resources: Medical professionals and patients rely on a number of resources to learn about the most current diagnostic tests or criteria for diseases. In the case of rare disease or even more common diseases that are challenging to diagnose, it is vital that these resources provide the most current information. You may wish to reach out to these resources to encourage them to update.
  • Your own website: This is one of the easiest ways for you to make certain the correct information about diagnostic testing and criteria is available. 
    • Work with your medical advisors to present the steps to diagnosis in the most useful way to medical professionals who are unfamiliar with your disease.
    • Highlight testing that may be required if only a subpopulation will benefit from the newly approved therapy.
  • Resources used by medical professionals: Doctors and other medical professionals involved in the diagnosis of rare or difficult to diagnose diseases may rely on medical information resources, so it is important to reach out to the resources that provide diagnostic (and treatment) information about your disease to encourage updates, if needed. Contact pages for resources that may have diagnostic information about specific rare diseases include:
    • • Genetic and Rare Diseases Information Center (GARD)
      • GeneReviews
      • NORD
      • StatPearls
      • DermNetNZ
      • UpToDate
      • MedScape
  • Other medical resources: Information about the diagnosis of your disease may also be listed on websites commonly used by patients seeking to learn more about their suspected diagnosis or searching for possible diagnoses. Again you may wish to reach out to these resources to encourage updates on diagnosis (and treatment) if needed. Examples include:
    • • Mayo Correction Policy
      • Healthline Offer Feedback
      • WebMD Correction Policy
• Publish. If diagnostic criteria have not been published for your disease or if the criteria or testing has changed since it was last published, consider working with your medical advisors and clinical network to submit a paper to the most relevant journals.
  • Many professional societies also have journals or newsletters that may work well for reaching the appropriate specialists or primary care providers involved in the diagnosis of your disease.

Resources