Table 1.
Dermatology patient registries*
| COVID-19 registries | |||
|---|---|---|---|
| Name | Disease | Scope | Website |
| AEDV COVID-Piel | COVID-19/Dermatology | National (Spain) | https://aedv.es/covid-piel |
| COVID-19 Dermatology Registry | COVID-19/Dermatology | International (Global) | https://www.aad.org/coronavirus |
| FSD (Société Française de Dermatologie) COVIDSKIN | COVID-19/Skin Lesions | National (France) | https://evenements-sfd.fr/coronavirus |
| Global Hidradenitis Suppurativa COVID-19 Registry | COVID-19/Hidradenitis Suppurativa | International (Global) | https://hscovid.ucsf.edu/ |
| PeDRA (Pediatric Dermatology Research Alliance) | COVID-19/Acral Ischemia/Perniosis in children | International (Global) | https://pedraresearch.org/covid |
| PsoProtect | COVID-19/Psoriasis | International (Global) | https://psoprotect.org |
| PsoProtectMe | COVID-19/Psoriasis | International (Global) | https://psoprotectme.org |
| SECURE-AD | COVID-19/Atopic dermatitis | International (Global) | https://www.secure-derm.com |
| SECURE-AD Patient Survey | COVID-19/Atopic dermatitis | International (Global) | https://www.secure-derm.com/secure-pad/ |
| SECURE-Alopecia | COVID-19/All forms of hair loss | International (Global) | https://www.secure-derm.com |
| General dermatology registries | |||
| Name | Disease | Scope | Website |
| A*STAR (The UK & Ireland Atopic eczema Systemic Therapy Register) | Atopic dermatitis | International (United Kingdom and Ireland) | https://astar-register.org |
| AtopyReg | Atopic dermatitis | National (Italy) | https://www.atopyreg.it/ |
| Biobadatop | Atopic dermatitis | National (Spain) | No link available |
| BioDay | Atopic dermatitis | International (Netherlands and Belgium) | https://www.bioday.nl/ |
| GREAT (Groupe de Recherche sur L'Eczéma ATopique) | Atopic dermatitis | National (France) | https://www.sfdermato.org/site/groupe-de-recherche-sur-l-eczema-atopique-great.html |
| Japan AD Registry (ADDRESS-J) | Atopic dermatitis | National (Japan) | https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000025749 |
| Pediatric Elective Eczema Project | Atopic dermatitis | National (US) | https://enroll.thepeerprogram.org/ |
| SCRATCH | Atopic dermatitis | National (Denmark) | No link available |
| SwedAD (Svenskt kvalitetsregister för Atopisk Dermatit) | Atopic dermatitis | National (Sweden) | http://swedad.nu/ |
| TREATgermany (TREatment of ATopic eczema, Germany | Atopic dermatitis | National (Germany) | http://www.treatgermany.org/ |
| TREAT NL (TREatment of ATopic eczema, the Netherlands) | Atopic dermatitis | National (Netherlands) | https://treatregister.nl |
| CARPE (Chronic Hand Eczema Registry on Long-term Patient Management) | Chronic hand eczema | National (Germany) | No link available |
| RegiSCAR | Cutaneous drug reactions | National (US) | http://www.regiscar.org |
| Cutaneous Lupus Registry | Cutaneous lupus | National (US) | https://www.utsouthwestern.edu/education/medical-school/departments/dermatology/research/cutaneous-lupus-registry/ |
| Central Cutaneous Lymphoma Registry | Cutaneous lymphoma | National (Germany) | https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=231889 |
| UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository | Dermatomyositis | International (United Kingdom and Ireland) | https://www.orpha.net/consor/cgi-bin/ResearchTrials_RegistriesMaterials.php?lng=EN&data_id=45340&RegistryMaterialName=English-juvenile-dermatomyositis-registry-and-repository |
| Ectodermal Dysplasias International Registry | Ectodermal dysplasias | International | https://nfed.patientcrossroads.org |
| EBCare Patient Insights Network | Epidermolysis bullosa | International | https://ebcare.patientcrossroads.org |
| EB Registry Austria | Epidermolysis bullosa | National (Austria) | https://www.orpha.net/EB-RegisterAustria |
| C1 Inhibitor Registry in the Treatment of Hereditary Angioedema Attacks | Hereditary angioedema | International | https://clinicaltrials.gov/NCT01397864 |
| English hereditary angioedema patient registry – part of the HAE European registry | Hereditary angioedema | National (United Kingdom) | https://www.orpha.net/consor/cgi-bin/ResearchTrials_RegistriesMaterials.php?lng=EN&data_id=35474N&RegistryMaterialName=English-hereditary-angioedema-patient-registry—part-of-the-HAE-European-registry |
| Firazyr Patient Registry Protocol (Icatibant Outcome Survey) | Hereditary angioedema | International | https://clinicaltrials.gov/NCT01034969 |
| HAE-registry: European hereditary angioedema patient registry | Hereditary angioedema | International | https://www.orpha.net/consor/cgi-bin/ResearchTrials_RegistriesMaterials.php?lng=EN&data_id=28343&RegistryMaterialName=HAE-registry–European-hereditary-angioedema-patient-registry |
| Hereditary Angioedema Association Scientific Registry | Hereditary angioedema | National (US) | https://www.haea.org/pages/p/LearnMoreSR |
| Spanish Patient Registry of Hereditary Angioedema | Hereditary angioedema | National (Spain) | https://www.orpha.net/consor/cgi-bin/ResearchTrials_RegistriesMaterials.php?lng=EN&data_id=30532&RegistryMaterialName=Registro-espa-ol-de-pacientes-con-angioedema-hereditario |
| International Rare Histiocytic Disorders Registry | Histiocytic disorders | International | https://clinicaltrials.gov/ct2/show/NCT02285582 |
| National Registry for Ichthyosis and Related Diseases | Ichthyosis | National (US) | http://www.firstskinfoundation.org/ |
| Network for Ichthyosis and Related Keratinization Disorders | Ichthyosis | National (Germany) | https://www.medizin.uni-muenster.de/ |
| KINDLERNET: Central patient registry Kindler syndrome | Kindler syndrome | International | https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=242250 |
| French Certified Patient Registry for Langerhans Cell Histiocytosis | Langerhans cell histiocytosis | National (France) | https://epidemiologie-france.aviesan.fr/en/epidemiology/records/french-langerhans-cell-histiocytosis-registry |
| German Registry for Langerhans Cell Histiocytosis in Childhood | Langerhans cell histiocytosis | National (Germany) | https://www.orpha.net/Deutschen-Registers-fur-Langerhanszell-Histiozytosen |
| Great Ormond Street Hospital Congenital Melanocytic Naevus | Melanocytic nevi | National (United Kingdom) | No link available |
| Registry for Congenital Melanocytic Nevi and Neurocutaneous Melanocytosis | Melanocytic nevi; neurocutaneous melanocytosis | National (Germany) | No link available |
| Morphea in Adults and Children | Morphea | National (US) | https://clinicaltrials.gov/ct2/show/NCT01808937 |
| International Pachyonychia Congenita Research Registry | Pachyonychia congenita | International | https://www.pachyonychia.org/patient-registry/ |
| Pemphigus-Pemphigoid Registry | Pemphigus; pemphigoid | International | http://www.pemphigus.org/pemphigus-pemphigoid-registry/ |
| Italian Registry of Patients and Families Affected by Pseudoxanthoma Elasticum | Pseudoxanthoma elasticum | National (Italy) | https://www.orpha.net/Pseudoxanthoma-elasticum |
| PXE International BioBank and Clinical Data Registry | Pseudoxanthoma elasticum | International | https://www.pxe.org/registry |
| AMC Psoriasis Registry | Psoriasis | National (Netherlands) | No link available |
| Australasian Psoriasis Registry | Psoriasis | International (Australia and New Zealand) | www.psoriasis.asn.au |
| BADBIR (British Association of Dermatologists Biologics and Immunomodulators Register) | Psoriasis | International (United Kingdom and Republic of Ireland) | http://www.badbir.org |
| Biobadaderm | Psoriasis | National (Spain) | https://biobadaser.ser.es/biobadaderm/ |
| BioCAPTURE | Psoriasis | National (Netherlands) | https://biocapture.nl |
| BIOREP | Psoriasis | National (Czech Republic) | No link available |
| Child-CAPTURE | Psoriasis | National (Netherlands) | No link available |
| Chronic Plaque Psoriasis Registry | Psoriasis | International | https://clinicaltrials.gov/ct2/show/study/NCT00799877 |
| Clalit Health Services Registry | Psoriasis | National (Israel) | No link available |
| Corrona Psoriasis Registry | Psoriasis | National (US) | https://www.corrona.org/registry/psoriasis |
| Dermbio | Psoriasis | National (Denmark) | https://www.dermbio.dk |
| MPR (Malaysian Psoriasis Registry) | Psoriasis | National (Malaysia) | https://www.dermatology.org.my/DermReg/index.htm |
| PsoBest | Psoriasis | National (Germany) | https://www.psobest.de/ |
| PSOBIOTEQ (French Psoriasis Registry) | Psoriasis | National (France) | https://epidemiologie-france.aviesan.fr/en/epidemiology/records/cohorte-multicentrique-de-patients-recevant-un-traitement-systemique-conventionnel-ou-biotherapie-pour-un-psoriasis-cutane-modere-a-severe |
| PsoCare | Psoriasis | National (Italy) | No link available |
| Psodit | Psoriasis | National (Italy) | No link available |
| PSOLAR (Psoriasis Longitudinal Assessment and Registry) | Psoriasis | International | https://clinicaltrials.gov/ct2/show/NCT00508547 |
| PsoNet | Psoriasis | International | http://www.psonet.eu/cms/ |
| PsoRA | Psoriasis | National (Austria) | https://psora.medunigraz.at |
| PsoReg | Psoriasis | National (Sweden) | https://www.psoreg.se |
| SDNTT (Swiss Dermatology Network of Targeted Therapies) | Psoriasis | National (Switzerland) | https://my.derma.ch/en/spec/SDNTT.html |
| Slovenian National Registry of Psoriasis | Psoriasis | National (Slovenia) | No link available |
| Hospital for Special Surgery Scleroderma Registry | Scleroderma | National (US) | https://www.hss.edu/clinical-trials_scleroderma-registry-repository.asp |
| Scleroderma Registry | Scleroderma | National (US) | https://clinicaltrials.gov/ct2/show/NCT00074568 |