A global, secure, online, de-identified Personal Health Identifier-free registry to record all COVID-19+ cases in alopecia patients on immunomodulating therapy
Joined April 2020
- Tweets45
- Following12
- Followers81
- Likes41
SECURE-Alopecia retweeted
Thank you to everyone who has contributed & all the groups who’ve supported awareness of the registries including @ad_secure @SecureAa
@debraireland @HealthySkin4All @ILDSDerm @SecureAa @AlopeciaUK @NAAF_org @eadv @eczemasupport @EczemaOutreach @nationaleczema @IADPO @BHNSociety
SECURE-Alopecia retweeted
Learning from Disease Registries During a Pandemic: Moving Towards an International Federation of Patient Registries.
So thrilled to have had the opportunity to write about #patientregistries during #COVID19 with such a wonderful group of co-authors.
cidjournal.com/article/S0738…
SECURE-Alopecia retweeted
Thanks to +500 people with #AtopicDermatitis (#eczema) who completed the SECURE-AD Patient Survey. The graph shows what happened to almost 200 of those who actually had #COVID19. If you have #AtopicDermatitis and had #COVID19, please complete our survey on secure-derm.com/secure-pad/
SECURE-Alopecia retweeted
Very grateful for the physicians reporting to the #AtopicDermatitis and #COVID19 registry. Below our latest results of 241 cases. Visit secure-derm.com to see more. Do you have #AtopicDermatitis and had #COVID19? Ask your doctor to report your case secure-derm.com/secure-ad-ph…
SECURE-Alopecia retweeted
Tagging my #covid registry collaborators so they can help spread the word that the Covid Dermatology Registry now captures dermatologic reactions/side effects of the #CovidVaccine ! @SuzanneOlbricht @PsoProtect @rheum_covid @ad_secure @SecureAa @MishaRosenbach @juleslipoff
SECURE-Alopecia retweeted
Pre-proof of our article is now available #openaccess in #ClinicsinDermatology
@NekiMeah @SinclairDerm @irvinederm @SecureAa
Shedding light on therapeutics in alopecia and their relevance to #COVID19
cidjournal.com/article/S0738…
SECURE-Alopecia retweeted
Prof Phyllis Spuls, dermatologist/study lead SECURE-AD, draws your attention to her upcoming talk about the “Use of Biologics and Immunosuppressive Drugs during the COVID-19 Pandemic” at the @eadv congress. If you have eczema and had #COVID19 please visit secure-derm.com.
SECURE-Alopecia retweeted
Great work by our @PsoProtect friends. Real-world #patientregistry data is always vital, but particularly during #COVID19. Please support
psoprotect.org
@ad_secure @SecureAa secure-derm.com
aad.org/member/practice/coro…
hscovid.ucsf.edu/global-hidr…
Biologics use is associated with lower risk of COVID-19 hospitalizations, according to a new study published in @jacionline by the team behind the @PsoProtect patient registry for psoriasis and COVID-19. Read the article here: ow.ly/1HzC50C0a5J
SECURE-Alopecia retweeted
Very sorry to hear how #COVID19 has affected you. Hope you are improving
A global group of dermatologists @SecureAa are studying this. Those with COVID who had or develop hair loss can ask their doc to anonymously register their case secure-derm.com/secure-alope…
Grateful 4 awareness
This Post is from an account that no longer exists. Learn more
SECURE-Alopecia retweeted
It’s not just hairloss caused by #COVID19 Emerging evidence suggests some #alopecia medication may improve COVID outcomes. We’re encouraging all who’ve developed COVID with new or preexisting hairloss to have their doctor register their case post recovery @neki_meah @SinclairDerm
SECURE-Alopecia retweeted
Hairloss can be a feature of #COVID19. Expert discussion from a recent meeting suggests multiple patterns. A global #patientregistry co-lead by Ireland is collecting data to answer questions @SecureAa secure-derm.com but we need more data. @Independent_ie @irvinederm
'Your worst hangover is a walk in the park compared to this. And young people can indeed get it. Please don't take chances' - Sinn Féin President Mary Lou McDonald on her chilling Covid-19 experience
independent.ie/irish-news/po…
SECURE-Alopecia retweeted
Click here for an introduction to this important talk from Professor Carsten Flohr youtube.com/watch?v=i0xNg95P…
SECURE-Alopecia retweeted
Prof. Carsten Flohr 🩺 speaks to patients with #eczema and their #healthcare workers about the SECURE-AD #COVID19 Patient Survey and Registry #Retweet to help us study the effects COVID19 has on patients with eczema @ad_secure #atopicdermatitis #dermtwitter #dermatology #research
Have #eczema? Been diagnosed with #COVID19 or experienced COVID19 symptoms?
Please complete the SECURE-AD online patient survey!
Completing this survey will help doctors understand how COVID19 affects people with eczema.
See video for more info 👇
youtube.com/watch?v=4WoVbx0b…
SECURE-Alopecia retweeted
Wonderful working with Tim & @bernd_020 on @ad_secure
Please view this extremely helpful video re our #patient & #physicians #registry & register if you’ve #atopicDermatitis & had #COVID19
Then please share!
If you’ve hairloss & COVID-please see our sister registry @SecureAa
How does #COVID19 affect people with #eczema? Help
@ad_secure to find that out. Do you have #eczema? Had #COVID19? Please fill in the patient survey at secure-derm.com/secure-pad/. Our patient representative Tim explains the project in a short video.
SECURE-Alopecia retweeted
Thank you @ahrsorg for a wonderful meeting. Fantastic speaker line up with comprehensive coverage of all aspects of #COVID19 & #alopecia.
Please remember to sign up & register patients to our @SecureAa registry discussed by @SinclairDerm
secure-derm.com
SECURE-Alopecia retweeted
We've created global physician & patient organisation endorsed #patientregistries to learn from outcomes of #COVID19 patients with #atopicdermatitis & #alopecia
Anonymous, quickly entered data with huge potential
secure-derm.com
@med_indonews @susmitchellSBP @IMT_latest
SECURE-Alopecia retweeted
The experience of #atopicdermatitis #eczema & #alopecia @SecureAa (any kind of hairloss) patients who've had #COVID19 can teach so much
secure-derm.com has physician-entered registries for both & a patient-entered registry for @ad_secure
@IrishPharmacy @irishpharmacist
We've created global physician & patient organisation endorsed #patientregistries to learn from outcomes of #COVID19 patients with #atopicdermatitis & #alopecia
Anonymous, quickly entered data with huge potential
secure-derm.com
@med_indonews @susmitchellSBP @IMT_latest
SECURE-Alopecia retweeted
As restrictions ease there’s still so much to know about #COVID19
If you’ve had COVID19 & have #alopecia (including male/female pattern) #eczema or #psoriasis, please let your doctors know @SecureAa @ad_secure @PsoProtect
can harness your experience anonymously to teach us more
SECURE-Alopecia retweeted
Does #alopecia #eczema & #psoriasis & their treatment affect COVID outcomes?
@SecureAa @ad_secure @PsoProtect can record outcomes of patients with these conditions who develop #COVID19 anonymously.
Please encourage registration & improve knowledge & treatment
@HealthySkin4All