The document discusses patient engagement in alopecia areata research led by the National Alopecia Areata Foundation (NAAF), highlighting the importance of patient involvement in studies and the lack of FDA-approved treatments. It reviews various treatment options, including JAK inhibitors and other drugs, alongside non-pharmaceutical approaches like laser therapy and dietary considerations. Additionally, it touches on the psychological impact of alopecia areata and emerging research on the significance of the gut microbiome in influencing hair loss.

1. NAAF and research:
patient engagement
Natasha Atanaskova Mesinkovska MD PhD
Chief Scientific Officer NAAF

2. Chief Scientific Officer NAAF
• Dermatologist
• Dermatopathologist
• PhD in Cancer Biology

4. Research role

5. Patients
patient is a researcher

6. Patient engagement
• The active participation in research

7. • Alopecia areata affects 2.1 percent of
the population
• 6.5 million people in the US

8. •Alopecia areata has
no FDA-approved drug

9. • NAAF Research Advisory Councils
Basic science Clinical research

10. NAAF Research Summits
• Every 2 years
• Bethesda, MD
• November 14-15th 2016, NYC

11. The NAAF Registry

12. Food and Drug Administration
and NAAF
• Patient-Focused Drug Development Initiative
• September , 2017

13. NAAF and The Industry
• Interest
• Awareness
• Connection platform

15. Research guided by patients
• Real world questions
• What bothers you most?
• What works best?
• Opinions PATIENTS
• Not only Physicians

16. Doctors may simply not know

17. How to get involved
• Focus groups
• interviews
• surveys
• registry
Most active form :
• study board or
• advisory council and
• attending regular meetings with researchers

18. Who should get involved?
• Everyone
• The more random=the better

19. Patients are needed
• Planning the study
• Conducting the Study
• Study results dissemination

20. • From They to We

21. www.naaf.org

26. Most commonly asked questions
Medications Devices Lifestyle

27. JAK JAK JAK
inhibitors
1. Tofacitinib (Xeljanz) Pfizer 2012 RA
2. Ruxolitinib (Jakafi) Novartis 2011 PV, myelofibrosis
3. Baricitinib ??? Eli Lilly
• Effectiveness: psoriasis, IBD, inflammatory skin diseases, atopic
dermatitis

29. JAK JAK JAK
• Yale, Stanford, Cleveland Clinic, Columbia
• Response rates
• Xeljanz 60%, 65%, 54%, 65%
• Teenagers 75% Yale
• Ruxolitinib 75%

31. Alopecia areata is reversed by JAK
inhibition
Luzhou Xing, et al.Nat Med. 2014 Sep; 20(9): 1043–1049.

32. Tofacitinib and nails

33. JAK inhibitors Side effects
• Most common (>2 %)
• upper respiratory tract infections
• nasopharyngitis
• headache
• diarrhea
• Herpes zoster discussed
• POTENTIAL serious: none reported
• increased mortality, serious infections (opportunistic infections and tuberculosis),
cardiovascular events or malignancies.

34. Tofacitinib
Labs:
• CBC
• CMP
• Lipid panel
• HIV
• TB
• Hepatitis panel

35. JAK inhibitors Side effects
• Most common (>2 %)
• upper respiratory tract infections
• headache
• diarrhea
• nasopharyngitis
• herpes zoster
• increased mortality, serious infections, including opportunistic infections
and tuberculosis, cardiovascular events, and malignancies.

36. Tofacitinib
• 5 mg PO BID, titrate if needed
• Cost: $3,164.41 Good Rx (access 2017)

37. Tofacitinib
• What happens when we stop?
• How come it does not work in everyone?
• How long do we treat?

38. Relapse on tofacitinib therapy
Alopecia universalis re-growth after 3 months relapse after 6 months of tofacitinib

39. Things to keep in mind
• Immunosuppressant
• European Medicine Agency: major concerns about the overall safety
profile.

40. What about topical?

41. Ruxolitinib 0.6% cream
12 weeks
Craiglow BG, Tavares D, King BA. Topical Ruxolitinib for the Treatment of Alopecia
Universalis. JAMA Dermatol. 2015 Dec 9.

42. Ruxolitinib 1.5% phosphate cream
• great data by Incyte and Dr. Olsen
• 50% at 12 weeks had > 50% regrowth

43. Topical Janus kinase inhibitors for the treatment of
pediatric alopecia areata
Bayart CB1, DeNiro KL2, Brichta L3, Craiglow BG4, Sidbury R2 J Am Acad Dermatol. 2017 Jul;77(1):167-170

44. What am I at risk for?

48. Chronic dry eyes
Ergin C1.Ocular findings in alopecia areata. Int J Dermatol. 2015 Nov;54(11):1315-8.
Dry eye disease (DED)
84% AA vs. 15% of controls (P < 0.01)

49. Patients with psoriasis are at greater risk of developing alopecia areata.
• Clin Exp Dermatol. 2015 Oct;40(7):717-21. Psoriatic alopecia. George SM1, Taylor MR2, Farrant PB3.

50. Ustekinumab injection
Guttman-Yassky E et al. Extensive alopecia areata is reversed by IL-12/IL-23p40 cytokine antagonism. J Allergy Clin Immunol. 2016 Jan;137(1):301-
4.

51. Psoriasis medications
1. Etanercept( Enbrel)
• Ineffective in an open-label study
2. Ustekinumab (Stelara )
1. Efficacious in a proof-of-concept human study
1. Secukinumab Cosentyx
• IL-17A Novartis Th17, perhaps
• NCT02599129

52. Ustekinumab injection
Guttman-Yassky E et al. Extensive alopecia areata is reversed by IL-12/IL-23p40 cytokine antagonism. J Allergy Clin Immunol. 2016 Jan;137(1):301-
4.

53. What if you do not want to use immunosuppressants
for AA?

54. Vytorin
simvastatin/ezetimibe
• Since 2007
• Alopecia Totalis/universalis
• Statins and ezetimibe
• Anti-inflammatory
• 14 of 19 were responders.
• Relapse after stopping
Lattouf C1Treatment of alopecia areata with simvastatin/ezetimibe. J Am Acad Dermatol. 2015 Feb;72(2):359-61.

55. Antihistamines in AA

57. Fexofenadine in AA
first visit 8 months 14 months later

58. Ophiasis
Fexofenadine 120 mg/day
3 months
8 months
Case of intractable ophiasis type of alopecia areata
presumably improved by fexofenadine.
Nonomura Y, Otsuka A, Miyachi Y, Kabashima K.
J Dermatol. 2012 Dec;39(12):1063-4.

59. Fexofenadine in AA
• Atopic patients 120-180 mg
• Chronic shedders
• Children 40 mg
• Eyelash

60. Other medications in AA
• NOTHING for AA

61. Light therapy

62. Hair and light
1. Low Level Laser Therapy (LLLT)
2. 308-nm Excimer laser

63. LLLT devices
• 655 nm (+/-5%)
• FDA clearance 2007
• increases hair density
• And regrowth in
• androgenetic alopecia
• not AA!

64. 2. Excimer laser (308 nm)
• Xenon chloride (308 nm)
• Inflammatory skin conditions

65. AA -8 sessions excimer
Akiko OHTSUKI, et al. Treatment of alopecia areata with 308-nm excimer lamp. Journal of Dermatology 2010; 37: 1032–1035

66. AA 10 sessions 308 nm
Akiko OHTSUKI, et al. Treatment of alopecia areata with 308-nm excimer lamp. Journal of Dermatology 2010; 37: 1032–
1035

67. regrowth in 42% of patches after 12 weeks

68. Excimer Side effects
• Most cases-tolerated well
• erythema
• hyperpigmentation
• erosions and blisters at too high doses

69. Hair and devices
1. Fractional lasers
• Ablative and Nonablative
2. Microneedling
Growing hair trough wounding

70. Wound healing and hair gowth
• Mice and wounding
• 2-3x increase in new hair

71. Hui-Jun Ma et al. Acquired Localized Hypertrichosis Induced by Internal Fixation and Plaster Cast Application. Ann Dermatol.
2013 Aug; 25(3): 365–367.

72. High frequency of hypertrichosis after cast application
• 34.2% of patients.
• Akoglu G1, Emre S, Metin A, Bozkurt M. Dermatology.
2012;225(1):70-4
Courtesy of Nina Caca Bijanovska MD

73. Wounding and hair

74. Fractional thermolysis (FT)
• microthermal zones of injury
• stimulates a robust wound healing response

75. Journal of Cosmetic and Laser Therapy, 2013; 15: 74–79
ORI GI NAL RESEARCH REPORT
Clinical effects of non- ablative and ablative fractional lasers on
var ious hair disorder s: a case ser ies of 17 patients
SUH YUN CH O1, M IN JU CH OI1, ZH EN L ON G ZH EN G1,2, BON CH EOL GOO3,
D O-YOUN G K IM 1 & SUN G BIN CH O1
1Department of Dermatology and Cutaneous Biology Research Institute,Yonsei University College of M edicine,
Seoul, Korea, 2Department of Dermatology,Yanbian University Hospital,Yanji, P. R. China, and
3Clinic L, Goyang, Korea
Abstract
Background and objectives: Both ablative and non-ablative fractional lasers have been applied to various uncommon hair
disorders. T he purpose of this study was to demonstrate the clinical effects of fractional laser therapy on the course of
primary follicular and perifollicular pathologies and subsequent hair regrowth. M aterialsand methods: A retrospective review
of 17 patients with uncommon hair disorders – including ophiasis, autosomal recessive woolly hair/hypotrichosis, various
secondar y cicatricial alopecias, pubic hypotrichosis, frontal fibrosing alopecia, and perifolliculitis abscedens et suffodiens –
was conducted. All patients had been treated with non-ablative and/or ablative fractional laser therapies. Results: T he mean
clinical improvement score in these 17 patients was 2.2, while the mean patient satisfaction score was 2.5. Of the 17 sub-
jects, 12 (70.6%) demonstrated a clinical response to non-ablative and/or ablative fractional laser treatments, including
individuals with ophiasis, autosomal recessive woolly hair/hypotrichosis, secondary cicatricial alopecia (scleroderma and
pressure-induced alopecia), frontal fibrosing alopecia, and perifolliculitis abscedens et suffodiens. Conversely, patients with
long-standing ophiasis, surgical scar-induced secondary cicatricial alopecia, and pubic hypotrichosis did not respond to
fractional laser therapy. Conclusion: Our findings demonstrate that the use of non-ablative and/or ablative fractional lasers
orpersonaluseonly.
• Treatment of Alopecia areata (ophiasis)
• Scarring alopecias (FFA, Scleroderma, scar)

76. 39 yo Female Alopecia areata
ophiasis
FL and/or AFL treatments, the treated areas
oled with icepacks. For patients treated with
n antibiotic ointment containing mupirocin
o applied to all the affected areas.
l cases, photographs were obtained at baseline
wo months after the final treatment session.
ve clinical assessments were performed by two
In the responder group, the minimal
sessions that showed any noticeable im
was 4.8 2.3. T he mean score of clinic
ment in the responder group was 2.8, wi
satisfaction score of 3.1. Specifically, pat
long history of ophiasis (cases 1 and 3: 1
months, respectively) demonstrated parti
A 39-year-old K orean male with ophiasis (case 3). (a) Prior to treatment. (b) Two weeks after five treatments wit
erbium–glass fractional laser treatment. (c) Two months after the final of 13 treatment sessions.
1550 nm Erb glass NA
5x 13 rx

77. Microneedling

79. Alopecia areata
microneedling and triamcinolone acetonide
Chandrashekar B etal J Cutan Aesthet Surg. 2014 Jan-Mar; 7(1): 63
microneedling and triamcinolone acetonide
.

80. What else?

81. Liquid nitrogen cryotherapy in recalcitrant
alopecia areata

84. Platelet-rich plasma (PRP)
• Growth factors in platelets' granules
• promoting hair growth.
-Angeliki GPlatelet-rich Plasma as a Potential Treatment for Noncicatricial Alopecias. Int J
Trichology. 2015 Apr-Jun;7(2):54-63Maria

87. Platelets rich plasma versus minoxidil 5% in treatment of alopecia areata: A
trichoscopic evaluation.
AA Patients treated with
PRP had an earlier
response
hair regrowth,
reduction in short
vellus hair and
dystrophic hair

88. Parent-of-origin Effect in Alopecia Areata: A Large-
scale Pedigree Study

89. • A “parent-of-origin effect”
• If the disease is inherited more frequently from paternal or maternal
• Or if it differs based on which side
• Multiple Sclerosis, Inflammatory Bowel Disease, Psoriatic arthritis
Parent-of-origin Effect in Alopecia Areata: A Large-
scale Pedigree Study

90. Acta Derm Venereol. 2017 Mar 28. doi: 10.2340/00015555-2658. [Epub ahead of print]
Redler S1, Basmanav FB, Blaumeiser B, Bartels NG, Lutz G,
Tafazzoli A, Kruse R, Wolff H, Böhm M, Blume-Peytavi U, Becker T, Nöthen MM, Betz RC.
Parent-of-origin Effect in Alopecia Areata: A Large-
scale Pedigree Study

91. • Maternal = paternal inheritance
• None had 2 affected parents
Parent-of-origin Effect in Alopecia Areata: A Large-
scale Pedigree Study

92. lifestyle

93. Physical, emotional, and social toll

94. A mixed methods survey of social anxiety, anxiety, depression and wig use in
alopecia.
BMJ Open. 2017 May 4;7(4):e015468. doi: 10.1136/bmjopen-2016-015468.
Montgomery K1, White C2, Thompson A1.

95. Mindfulness-based interventions improve the quality of life of
patients with moderate/severe AA

96. Acupuncture and AA

97. Mice : decrease in allergy cells- mast cells

99. Microbiome

103. Change microbiome= prevent alopecia?
• Dr. James Chen , Society for Investigative Dermatology, 2016
• Skin microbiome
• not involved in alopecia areata
• Bacterial culprits in alopecia => gut microbiome
• Oral antibiotics prevented development of alopecia areata
• Current:
• testing combinations of antibiotics
• fecal transplants
• ?which gut bacteria make mice susceptible to hair loss.

105. Oral health
• More than 700 bacterial species
• ? Flossing
Alopecia areata of dental origin in a child
A Victor Samuel etal IJDR 2012(23):5.

113. Natasha Mesinkovska MD PHD
info@naaf.org