Results 21 to 30 of about 722,064 (339)

Global systematic review of primary immunodeficiency registries

Expert Review of Clinical Immunology, 2020
Introduction During the last 4 decades, registration of patients with primary immunodeficiencies (PID) has played an essential role in different aspects of these diseases worldwide including epidemiological indexes, policymaking, quality controls of care/
Hassan Abolhassani, G. Azizi, L. Sharifi, R. Yazdani, M. Mohsenzadegan, S. Delavari, M. Sohani, P. Shirmast, Z. Chavoshzadeh, S. Mahdaviani, A. Kalantari, M. Tavakol, F. Jabbari-Azad, H. Ahanchian, Tooba Momen, R. Sherkat, M. Sadeghi-shabestari, S. Aleyasin, H. Esmaeilzadeh, W. Al-Herz, A. Bousfiha, A. Condino-Neto, M. Seppänen, K. Sullivan, L. Hammarström, V. Modell, F. Modell, J. Quinn, J. Orange, A. Aghamohammadi   +29 more
semanticscholar   +1 more source

Establishing Patient Registries for Rare Diseases: Rationale and Challenges

Pharmaceutical Medicine, 2020
Globally, an estimated 350 million people are affected by a rare disease diagnosis. Knowledge limitations persist for the majority of rare conditions due to systemic and structural challenges in healthcare and research.
V. Boulanger, Marissa Schlemmer, S. Rossov, A. Seebald, P. Gavin   +4 more
semanticscholar   +1 more source

Mihai Gheorghiade, MD-Life and Concepts [PDF]

, 2018
How do you capture an idea, shape it, and then bring it into the world? Of his many talents, this ability was a fundamental characteristic of Mihai Gheorghiade.
Butler, Javed, Chioncel, Ovidiu, Collins, Sean P., Pang, Peter S.   +3 more
core   +1 more source

The TOSCA Registry for Tuberous Sclerosis-Lessons Learnt for Future Registry Development in Rare and Complex Diseases. [PDF]

, 2019
Introduction: The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC).
Beaure d'Augères, Guillaume, Belousova, Elena, Benedik, Mirjana P., Carter, Tom, Cottin, Vincent, Curatolo, Paolo, D'Amato, Lisa, Dahlin, Maria, de Vries, Petrus J., Ferreira, José C., Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jansen, Anna C., Jozwiak, Sergiusz, Kingswood, John C., Lawson, John A., Macaya, Alfons, Marques, Ruben, Nabbout, Rima, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, TOSCA Consortium and TOSCA Investigators, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard   +29 more
core   +2 more sources

Psoriatic Arthritis Registries

The Journal of Rheumatology Supplement, 2015
The introduction of new biological drugs for the treatment of rheumatoid arthritis and spondyloarthritis has led to the creation of a number of registries in Europe and the United States. Most of them are sponsored by national rheumatology societies, and provide information that is useful in clinical practice concerning the clinical characteristics ...
Sarzi-Puttini, Piercarlo, Varisco, Valentina, Ditto, Maria Chiara, Benucci, Maurizio, Atzeni, Fabiola   +4 more
openaire   +3 more sources

Cardiac arrest and sudden cardiac death registries: a systematic review of global coverage

Open Heart, 2020
Background Sudden cardiac death (SCD) is a major global health problem, accounting for up to 20% of deaths in Western societies. Clinical quality registries have been shown in a range of disease conditions to improve clinical management, reduce variation
E. Paratz, L. Rowsell, D. Zentner, S. Parsons, N. Morgan, T. Thompson, P. James, A. Pflaumer, C. Semsarian, Karen Smith, D. Stub, A. La Gerche   +11 more
semanticscholar   +1 more source

Creditor Passivity: The Effects of Bank Competition and Institutions on the Strategic Use of Bankruptcy Filings [PDF]

, 2007
Why do banks remain passive? In a model of bank-firm relationship we study the trade-off a bank faces when having defaulting firms declared bankrupt. First, the bank receives a payoff if a firm is liquidated.
Hainz, Christa
core   +3 more sources

Orthopaedic registries with patient-reported outcome measures

EFORT Open Reviews, 2019
Total joint arthroplasty is performed to decreased pain, restore function and productivity and improve quality of life. One-year implant survivorship following surgery is nearly 100%; however, self-reported satisfaction is 80% after total knee ...
I. Wilson, E. Bohm, A. Lübbeke, S. Lyman, S. Overgaard, O. Rolfson, A. W-Dahl, M. Wilkinson, M. Dunbar   +8 more
semanticscholar   +1 more source

The microRNA Registry [PDF]

Nucleic Acids Research, 2004
The miRNA Registry provides a service for the assignment of miRNA gene names prior to publication. A comprehensive and searchable database of published miRNA sequences is accessible via a web interface (http://www.sanger.ac.uk/Software/Rfam/mirna/), and all sequence and annotation data are freely available for download.
openaire   +3 more sources

National diabetes registries: do they make a difference?

Acta Diabetologica, 2020
The global epidemic of diabetes mellitus continues to expand, including its large impact on national health care. Measuring diabetes outcomes and their causes of variation highlights areas for improvement in care and efficiency gains; large registries ...
Jessica C G Bak, E. Serné, M. Kramer, Max Nieuwdorp, C. L. Verheugt   +4 more
semanticscholar   +1 more source