Learning from Disease Registries During a Pandemic: Moving Towards an International Federation of Patient Registries.

The Alopecia Areata Consensus of Experts (ACE) study: Results of an international expert opinion on treatments for alopecia areata

(2020) Nekma Meah et al.   JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY

Development of an openEHR Template for COVID-19 Based on Clinical Guidelines

(2020) Mengyang Li et al.   JOURNAL OF MEDICAL INTERNET RESEARCH

International collaboration and rapid harmonization across dermatologic COVID-19 registries

(2020) Esther E. Freeman et al.   JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY

Generic outcome set for the international registry on Laser trEAtments in Dermatology (LEAD): a protocol for a Delphi study to achieve consensus on what to measure

(2020) Frederike Fransen et al.   BMJ Open

TRE atment of AT opic eczema ( TREAT ) Registry Taskforce: consensus on how and when to measure the core dataset for atopic eczema treatment research registries

(2019) F.M. Vermeulen et al.   BRITISH JOURNAL OF DERMATOLOGY

A Standardisation Approach to Compare Treatment Safety and Effectiveness Outcomes between Clinical Trials and Real World Populations in Psoriasis

(2019) Z. Z. N. Yiu et al.   BRITISH JOURNAL OF DERMATOLOGY

Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia

(2019) Dalibor Stanimirovic et al.   Orphanet Journal of Rare Diseases

Strengthening standards, transparency, and collaboration to support medicine evaluation: Ten years of the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance (ENCePP)

(2018) Xavier Kurz et al.   PHARMACOEPIDEMIOLOGY AND DRUG SAFETY

Comparison of Drug Discontinuation, Effectiveness, and Safety Between Clinical Trial Eligible and Ineligible Patients in BADBIR

(2018) Kayleigh J. Mason et al.   JAMA Dermatology

The International TREatment of ATopic Eczema (TREAT) Registry Taskforce: An Initiative to Harmonize Data Collection across National Atopic Eczema Photo- and Systemic Therapy Registries

(2017) Phyllis I. Spuls et al.   JOURNAL OF INVESTIGATIVE DERMATOLOGY

TREatment of ATopic eczema (TREAT) Registry Taskforce: protocol for an international Delphi exercise to identify a core set of domains and domain items for national atopic eczema registries

(2017) Louise A. A. Gerbens et al.   Trials

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer

(2017) Pedro Sernadela et al.   Biomed Research International

Review of patient registries in dermatology

(2016) Gabriella DiMarco et al.   JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY

Establishment of a European Registry for hidradenitis suppurativa/acne inversa by using an open source software

(2015) M. Daxhelet et al.   JOURNAL OF THE EUROPEAN ACADEMY OF DERMATOLOGY AND VENEREOLOGY

The British Association of Dermatologists’ Biologic Interventions Register (BADBIR): design, methodology and objectives

(2012) A.D. Burden et al.   BRITISH JOURNAL OF DERMATOLOGY

Challenges for Synthesising Data in a Network of Registries for Systemic Psoriasis Therapies

(2012) A.D. Ormerod et al.   DERMATOLOGY

Significance of Patient Registries for Dermatological Disorders

(2012) Mark P. de Souza et al.   JOURNAL OF INVESTIGATIVE DERMATOLOGY

Use Of 13 Disease Registries In 5 Countries Demonstrates The Potential To Use Outcome Data To Improve Health Care’s Value

(2011) Stefan Larsson et al.   HEALTH AFFAIRS

A registry of registries? The US backs the idea for patients

(2011) Monica Heger   NATURE MEDICINE

Assessing Long-Term Drug Safety: Lessons (Re) Learned from Raptiva

(2010) Nicole M. Seminara et al.   SEMINARS IN CUTANEOUS MEDICINE AND SURGERY

Efalizumab: results of a 3-year continuous dosing study for the long-term control of psoriasis

(2008) C. Leonardi et al.   BRITISH JOURNAL OF DERMATOLOGY