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Alopecia Areata: A Patient's Perspective

A viewpoint of alopecia areata from a patient, researcher in the immunology field, and advocate for the alopecia areata patient community.

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Alopecia Areata: A Patient's Perspective

  1. 1. Alopecia Areata: A Patient’s Perspective Dustin Lee National Alopecia Areata Foundation
  2. 2. Alopecia Areata • Affects 6.8 million people in the U.S. • About 2% lifetime incidence
  3. 3. Background • Patient • Advocate • Researcher
  4. 4. Health and Research Ambassadors Program (HARA) • 2015: NAAF launched the HARA program, led by Angela Rodgers • Purpose: To advance alopecia areata research by facilitating the discussion of information between patients and researchers/clinicians • HARA: Bridge patients’ desired treatment options and results to the researchers who study alopecia areata and the clinicians who design/deliver treatments
  5. 5. Who are HARAs? • HARAs are patients with alopecia areata who have experience in the fields of research, medicine, or psychology. • HARAs combine the patient aspect with relevant knowledge to represent the alopecia areata community in meetings with representatives from industry.
  6. 6. HARA and Industry Partnership • HARAs meet with representatives from industry to contribute patient insights into concerns such as decision factors for new treatment, emotional impact of disease, and patient experience with certain treatments. • However, HARAs also bring questions from industry back to the patient community for more insight.
  7. 7. HARA and Industry Meetings • American Academy of Dermatology Meeting (Feb. 2018) • International Investigative Dermatology Meeting (May 2018) • NAAF Annual Patient Conference (June/July 2018) • NAAF Alopecia Areata Research Summit (Dec. 2018)
  8. 8. HARA and Industry Meetings • Industry representatives attend partnership meetings for insights into patient-related information, such as... – measurements of Patient-Reported Outcome tools – patients’ meaningful endpoints • HARAs act as a resource of this information to foster collaboration and communication.
  9. 9. Examples of Industry Partnerships • 2016: LEO Pharma conducted a large-scale survey on patients with psoriasis studying the psychosocial effects of disease diagnosis and patients’ treatment goals/expectations. • 2016: Novartis reported results from a large global survey investigating similar insights from patients living with psoriasis.
  10. 10. The Value of Industry Partnerships • Collaboration between researchers in industry and the patient community promote an increase in successful research studies. • Communication in Industry Partnership roundtable meetings contribute to a stronger understanding of patients’ perspectives on meaningful endpoints and Patient-Reported Outcomes.
  11. 11. In Summary… • The Health and Research Ambassadors program bridges patients’ reported treatment results to investigators and clinicians in the alopecia areata treatment research field. • HARAs help further collaboration and communication between the alopecia areata patients and researchers in industry. • HARA and industry cooperation facilitate research into alopecia areata.
  12. 12. Thank You

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A viewpoint of alopecia areata from a patient, researcher in the immunology field, and advocate for the alopecia areata patient community.

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