Results 31 to 40 of about 295,448 (268)

Impact of the National Amyotrophic Lateral Sclerosis Registry: Analysis of Registry‐funded Research

Annals of Clinical and Translational Neurology, 2022
Objective This research aims to examine the impact of the National Amyotrophic Lateral Sclerosis (ALS) Registry‐funded research activities. Methods Registry‐funded research and related publications were identified through the National ALS Registry ...
Lindsay Rechtman, Stephan Brenner, Marcienne Wright, Maggie Ritsick, Farhana Rahman, Moon Han, Jaime Raymond, Theodore Larson, D. Kevin Horton, Paul Mehta   +9 more
doaj   +1 more source

CPAnet Registry—An International Chronic Pulmonary Aspergillosis Registry [PDF]

Journal of Fungi, 2020
Chronic pulmonary aspergillosis (CPA) is a chronic fungal infection of the lung associated with high morbidity and mortality. The CPA Research network (CPAnet) registry established in 2018 is an international multicenter collaboration aiming to improve CPA knowledge and patient care.
Christian B. Laursen, Jesper Rømhild Davidsen, Lander Van Acker, Helmut J.F. Salzer, Danila Seidel, Oliver A. Cornely, Martin Hoenigl, Ana Alastruey-Izquierdo, Christophe Hennequin, Cendrine Godet, Aleksandra Barac, Holger Flick, Oxana Munteanu, Eva Van Braeckel   +13 more
openaire   +6 more sources

European Standard Clinical Practice Guideline and EXPeRT Recommendations for the Diagnosis and Management of Gastroenteropancreatic Neuroendocrine Neoplasms in Children and Adolescents

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Pediatric gastroenteropancreatic neuroendocrine neoplasms (GEP‐NENs) are extremely rare and clinically heterogeneous. Management has largely been extrapolated from adult practice. This European Standard Clinical Practice Guideline (ESCP), developed by the EXPeRT network in collaboration with adult NEN experts, provides (adult) evidence ...
Michaela Kuhlen, Calogero Virgone, Antje Redlich, Michael Abele, Ricardo Lopez‐Almaraz, Tal Ben‐Ami, Ewa Bien, Gianni Bisogno, Maja Mazic Cesen, Andrea Ferrari, Malgorzata A. Krawczyk, Yves Reguerre, Dominik T. Schneider, Ines B. Brecht, Charlotte Rigaud, Bilgehan Yalcin, Rainer Claus, Christian Vokuhl, Constantin Lapa, Jörg Fuchs, Segolene Hescot, Thomas Walter, Julien Hadoux, Daniel Orbach   +23 more
wiley   +1 more source

Morbidity and Mortality of Pediatric Spinal Deformity Surgery Using the Japanese Orthopedic Association National Registry/Japanese Society for Spine Surgery and Related Research Database (JOANR/JSSR-DB)

Spine Surgery and Related Research
Introduction: The Japanese Scoliosis Society conducted a survey on the complications of pediatric spinal deformity surgeries in 2012, 2014, and 2017.
Hideyuki Arima, Takumi Takeuchi, Yu Yamato, Tomoyuki Asada, Satoru Demura, Toru Doi, Akira Matsumura, Hiroki Oba, Ryo Sugawara, Satoshi Suzuki, Shinji Takahashi, Haruki Ueda, Kei Watanabe, Naobumi Hosogane   +13 more
doaj   +1 more source

Time trends in survival and causes of death in multiple myeloma: a population-based study from Germany

BMC Cancer, 2023
Background Steady evolution of therapies has improved prognosis of patients with multiple myeloma (MM) over the past two decades. Yet, knowledge about survival trends and causes of death in MM might play a crucial role in long-term management of this ...
Christine Eisfeld, Hiltraud Kajüter, Lennart Möller, Ina Wellmann, Evgenii Shumilov, Andreas Stang   +5 more
doaj   +1 more source

All Ireland cancer statistics: second report: A collaborative report by the Northern Ireland Cancer Registry and the National Cancer Registry (Ireland): A profile of cancer incidence, mortality and survival for the island of Ireland, 1998-2000 [PDF]

, 2004
These are highlights from the second collaborative report produced by the Northern Ireland Cancer Registry and the National Cancer Registry (Ireland). Data from both registries have been merged and integrated to profile and assess the cancer incidence
National Cancer Registry Ireland (NCRI)
core  

Solid Pseudopapillary Neoplasm of the Pancreas in Children and Adolescents: Expert Recommendations

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Solid pseudopapillary neoplasm of the pancreas (SPN) is a rare low‐grade malignant exocrine pancreatic tumor, mostly discovered during the second decade of life in females, with a very good prognosis, provided microscopically complete surgical excision is achieved.
Sabine Irtan, Michael Abele, Calogero Virgone, Michaela Kuhlen, Ricardo Lopez‐Almarez, Tal Ben‐Ami, Ewa Bien, Maja Cesen, Malgorzata A. Krawczyk, Andrea Ferrari, Gianni Bisogno, Yves Reguerre, Dominik T. Schneider, Louise Galmiche, Jorg Fuchs, Sarah Braungart, Bilgehan Yalcin, Ines B. Brecht, Daniel Orbach   +18 more
wiley   +1 more source

National Rare Diseases Registry System (NRDRS): China’s first nation-wide rare diseases demographic analyses

Orphanet Journal of Rare Diseases, 2021
Background China has made tremendous progresses in serving the needs of its people living with rare diseases in the past decade, especially over the last 5 years.
Jian Guo, Peng Liu, Limeng Chen, Haohan Lv, Jie Li, Weichao Yu, Kaifeng Xu, Yicheng Zhu, Zhihong Wu, Zhuang Tian, Ye Jin, Rachel Yang, Weihong Gu, Shuyang Zhang, the Administrative Group of National Rare Diseases Registry System of China   +14 more
doaj   +1 more source

Ovarian Sex Cord Stromal Tumors in Children and Adolescents—The European Standard Clinical Practice Recommendations

Pediatric Blood &Cancer, EarlyView.
ABSTRACT As part of the European Cooperative Study Group for Paediatric Rare Tumours initiative, we developed standard clinical practice guidelines for ovarian sex cord stromal tumors, based on comprehensive national and international cohort analyses, literature review, and a final expert consensus conference.
Dominik T. Schneider, Kris‐Ann Schultz, Nora Schnitzler, Michael Abele, Tal Ben‐Ami, Ewa Bien, Gianni Bisogno, Ines B. Brecht, Maja Cesen, Andrea Ferrari, Michaela Kuhlen, Malgorzata A. Krawczyk, Ricardo Lopez‐Almaraz, Yves Reguerre, Calogero Virgone, Daniel Orbach   +15 more
wiley   +1 more source

Incidence of advanced-stage breast cancer in regular participants of a mammography screening program: a prospective register-based study

BMC Cancer, 2020
Background The European Guidelines for breast cancer screening suggest that the impact of population-based mammography screening programmes (MSP) may be assessed using the relative reduction in the incidence of advanced breast cancer (ABC, that is, stage
Laura Khil, Jan Heidrich, Ina Wellmann, Vanessa Kääb-Sanyal, Stefanie Weigel, Walter Heindel, Hans-Werner Hense, Oliver Heidinger   +7 more
doaj   +1 more source