On Rare Disease Day, ACCORD Highlights Opportunity for Primary Care Clinicians to Advance Care for Patients with Rare Diseases

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Association publishes white papers showing unmet educational needs, develops an upcoming CME conference to help address them

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In recognition of Rare Disease Day, the Association for Comprehensive Care in Rare Diseases (ACCORD) has released a second white paper highlighting the needs of primary care clinicians who see patients with rare diseases. This report, along with a previous ACCORD white paper, confirms that primary care clinicians often provide routine care for patients with rare diseases, yet often must do so with limited validated information and resources at their disposal.

For the 30 million Americans living with a rare disease, the need for medical care does not end with their rare disease. All of these patients share a need for individualized, comprehensive primary care. Routine medical needs, including vaccinations, the interpretation of clinical lab results, and the refilling of prescriptions prescribed by a specialist all remain critical. Despite the fact that 1 in 10 Americans has a rare disease, only 50% of clinicians feel confident in their ability to manage the routine medical needs for these patients, according to surveys conducted by ACCORD and reported in these two white papers.

The surveys indicate a dearth of formal training and resources available to primary care clinicians in need of such specialized information. In the most recent ACCORD survey of 672 health care providers, nearly two-thirds reported a desire to know more about using appropriate tools and resources to manage primary care needs in patients with rare diseases.

An overwhelming absence of standardized protocols may account for the gap in confidence. The initial survey conducted by ACCORD found that fewer than 30% of 536 respondents have established protocols for managing primary care issues for their patients with rare diseases.

In addition, the surveys found that primary care clinicians may be forced to fall back on Internet searches for information on how to manage medical issues for these patients. More than half of respondents also cited a lack of critical patient and caregiver resources to educate on rare diseases.

“Primary care clinicians do so much day-to-day management of patients with rare diseases, but unfortunately they may often need to do so without a proper set of tools and resources,” commented Dr Kevin B. Gebke of Indiana University School of Medicine. “I completely agree. In our community we see the same thing,” said Dr James Sloan Manning of the University of North Carolina, Chapel Hill.

To help address this need, ACCORD will host a continuing medical education (CME) event for primary care clinicians on June 9-10, 2016 in Las Vegas. The first conference of its kind, RD1°: Optimizing Primary Care for Patients with Rare Diseases will provide education, tools, and resources that will help clinicians to:

  • Understand why primary care is critical to the overall management of rare diseases
  • Identify clinical clues that expedite diagnosis of rare diseases in different clinical settings
  • Develop successful referral networks
  • Locate resources for clinical practice
  • Utilize tools and resources to manage the whole patient
  • Optimize care for special populations (eg, pediatric and female patients)

“We see this meeting as an opportunity for the rare disease treatment community to come together, to discuss how we can better equip clinicians to meet the challenge of providing primary care for patients with rare diseases,” said Dr Robert Saul, who is the RD1° program chair and the Medical Director of General Pediatrics in the Greenville Health System, South Carolina. “In the spirit of Rare Disease Day, we hope that clinicians in the trenches will commit today to attending what promises to be a very rewarding meeting for all involved.”

Registration is now open on the website, http://www.ACCORDCME.org, for clinicians interested in attending the conference. Continuing medical education credits will be available to health care providers through the University of Cincinnati, Health and Wellness Education Partners, and the Global Academy for Medical Education.

ACCORD white papers and surveys can be accessed by visiting http://www.ACCORDweb.org/Resources.

The Association for Comprehensive Care in Rare Diseases—or ACCORD—is a new ally in the rare disease community that focuses specifically on improving the quality of primary care for people living with rare diseases, by championing clinical and administrative best practices for managing these conditions, facilitating dialogue between primary care and specialty care providers, and equipping providers with tools and resources to address patients’ unmet needs.

ACCORD is committed to enhancing primary care for patients with rare diseases.

For more information on ACCORD, please visit http://www.ACCORDweb.org or email contact(at)ACCORDweb(dot)org.

This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of the University of Cincinnati, Health and Wellness Education Partners, and the Global Academy for Medical Education.

The University of Cincinnati is accredited by the ACCME to provide continuing medical education for physicians.

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Jessica Tuohy
Health & Wellness Education Partners
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