NORD and FMC’s Gene Therapy Survey: A Call to Action for Healthcare Professional Education

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The results of a survey on gene therapy conducted by NORD and Frontline Medical Communications (FMC) among physicians and other healthcare professionals were recently announced. The responses indicated significant knowledge gaps among providers across 14 specialty areas.

For instance:

  • 63% of respondents were unaware of current FDA-approved gene therapies.
  • Respondents reported a low level of comfort in discussing gene therapy with patients.
  • Only 20% of respondents reported discussing gene therapy options or clinical trials with their patients.
  • 54% of respondents identified “limited knowledge among healthcare professionals” as one of the top barriers to gene therapy.

NORD has long considered educating healthcare professionals on topics of importance to the rare disease community to be an essential part of its mission. These survey findings underscore the particular need at this time for education related to gene therapy.

For many people living with severely disabling genetic diseases, gene therapy represents hope for an effective — or possibly even curative — treatment. As these individuals and their families seek to better understand gene therapy and what it might mean for them, it’s important for their healthcare providers to be able to walk with them on that journey.

The online survey was conducted between mid-November 2019 and mid-January 2020. A total of 1,472 participants completed questionnaires, 87% of whom were physicians. Others included nurse practitioners and physician assistants.

Family practice providers constituted the largest group of respondents at 13%. Other specialty areas represented included pulmonology, cardiology, endocrinology/gastroenterology, hepatology, pediatrics, internal medicine, neurology, infectious disease, hematology/oncology, obstetrics/gynecology, rheumatology and dermatology.

For NORD and its member organizations, the survey results represent a call to action to promote education for healthcare providers on topics related to gene therapy and its potential importance for the rare disease community.

Complete survey results are reported and discussed in the March 2020 Rare Neurological Disease Special Report published by NORD and FMC.