scholarly journals Congenital and childhood-onset myotonic dystrophy: importance of long-term data in natural history

2015 ◽  
Vol 58 (7) ◽  
pp. 652-652
Author(s):  
Ulrike Schara
Keyword(s):  
Natural History ◽  
Myotonic Dystrophy ◽  
Childhood Onset ◽  
Term Data

scholarly journals SwissCollNet – A National Initiative for Natural History Collections in Switzerland

2019 ◽  
Vol 3 ◽  
Author(s):  
Holger Frick ◽  
Pia Stieger ◽  
Christoph Scheidegger
Keyword(s):  
Natural History ◽  
Data Archiving ◽  
Data Infrastructure ◽  
Botanical Gardens ◽  
Natural History Collections ◽  
Common Strategy ◽  
National Initiative ◽  
Educational Potential ◽  
Term Data

More than 60 million specimens are housed in geological and biological collections in numerous museums and botanical gardens located all over Switzerland. They are of national and international origin. Taken together they form an entity with a high scientific value and international recognition for their contribution to scientific research. Due to the federalistic organisation of Switzerland, natural history collections are located and curated in numerous institutions. So far, no common strategy for digitisation, documentation and long-term data archiving has been developed. This shortcoming has been widely identified by concerned parties. Under the lead of the Swiss Academy of Sciences, several organisations have assembled information about Swiss natural history collections. They identified measures to be taken to promote the scientific and educational potential of natural history collections in Switzerland (Beer et al. 2019). With a national initiative, the Swiss Natural History Collections Network (SwissCollNet) aims to unite Swiss natural history collections under a common vision and with a common strategy. The goal is to promote the collections themselves and to harness the scientific and educational potential of these collections for research and training. SwissCollNet consists of representatives of research, teaching, museums and botanical gardens, the data centers for information on the national fauna and flora, the Swiss Systematics Society and the Swiss node of GBIF, the Global Biodiversity Information Facility. The initiative aims to foster research on natural history collections. It will provide a single decentralised data infrastructure framework for Swiss research related to natural history. It will help to harmonise nationwide collection data management, digitisation and long-term data archiving. It will facilitate identification of specimens and revision of taxonomic groups. New research techniques, fast-evolving computer technologies and internet connectivity, create new opportunities for deciphering and using the wealth of information housed in Swiss and international collections. The development of an agreed strategy and research priorities on a national scale will allow fluent, fluid and permanent collaboration across all Swiss natural history collections by promoting interoperability and unified access to collections as well as creating opportunities for scientific collaboration and innovation. This national approach will create an internationally compatible research data infrastructure, while respecting and integrating regional and decentralized conditions and requirements. Thus, it will maximize the impact for science, policy and society.

scholarly journals Recent advances in understanding urethral lichen sclerosus

F1000Research ◽  
2016 ◽  
Vol 5 ◽  
pp. 96 ◽  
Author(s):  
Altaf Mangera ◽  
Nadir Osman ◽  
Christopher R. Chapple
Keyword(s):  
Natural History ◽  
Male Genitalia ◽  
Lichen Sclerosus ◽  
Recent Advances ◽  
History Of ◽  
Surgical Treatments ◽  
Term Data

Lichen sclerosus affecting the male genitalia is a poorly understood but potentially devastating condition. The natural history of the condition is beginning to be understood better with longer follow-up of patients. Recent long-term data suggest that circumcision for lichen sclerosus limited to the prepuce may not be curative as was once thought. In addition, surgical treatments should be followed up for longer periods as recurrences may occur after urethroplasty and perineal urethrostomy.

Myotonic dystrophy type 1: Long term natural history data

2016 ◽  
Vol 26 ◽  
pp. S195-S196
Author(s):  
L. De Waele ◽  
C. Vanwesemael ◽  
N. Goemans
Keyword(s):  
Natural History ◽  
Myotonic Dystrophy ◽  
Myotonic Dystrophy Type 1 ◽  
Myotonic Dystrophy Type ◽  
History Data

scholarly journals The natural history of congenital myotonic dystrophy: mortality and long term clinical aspects.

1993 ◽  
Vol 68 (2) ◽  
pp. 177-181 ◽  
Author(s):  
W Reardon ◽  
R Newcombe ◽  
I Fenton ◽  
J Sibert ◽  
P S Harper
Keyword(s):  
Natural History ◽  
Myotonic Dystrophy ◽  
Clinical Aspects ◽  
Congenital Myotonic Dystrophy ◽  
History Of

scholarly journals Uveal Melanoma

1998 ◽  
Vol 5 (4) ◽  
pp. 299-309 ◽  
Author(s):  
Marilyn C. Kincaid
Keyword(s):  
Malignant Melanoma ◽  
Natural History ◽  
Uveal Melanoma ◽  
Therapeutic Intervention ◽  
Clinical Findings ◽  
Tumor Control ◽  
Uveal Tract ◽  
Rare Malignancy ◽  
Term Data

Background Malignant melanoma of the uveal tract is a rare malignancy but a significant cause of mortality and visual loss. Approximately 50% of patients diagnosed with a melanoma of the choroid or ciliary body will die of the disease within 15 years of enucleation. Methods The author reviewed the current literature on the clinical findings, epidemiology, and treatment of uveal melanoma. Results Methods of diagnosis have improved substantially in the past several years, although clinical diagnosis by an experienced examiner remains the standard in eyes with clear media. Ultrasound is the most useful adjunctive technique. While enucleation has been the mainstay of therapeutic intervention, alternative therapies – especially different types of irradiation – offer hope for tumor control and vision preservation. The Collaborative Ocular Melanoma Study, a multicenter national trial, is designed to provide long-term data on the natural history as well as therapeutic intervention. Conclusions Malignant melanoma of the uveal tract can be diagnosed clinically with more confidence than ever before. It is also possible in many cases to retain the eye and functional vision while controlling the tumor. However, unanswered questions remain about the natural history and optimal therapy of uveal melanoma.

Brief Report: Childhood-Onset Systemic Necrotizing Vasculitides: Long-Term Data From the French Vasculitis Study Group Registry

2015 ◽  
Vol 67 (7) ◽  
pp. 1959-1965 ◽  
Author(s):  
Michele Iudici ◽  
Xavier Puéchal ◽  
Christian Pagnoux ◽  
Pierre Quartier ◽  
Christian Agard ◽  
...  
Keyword(s):  
Study Group ◽  
Childhood Onset ◽  
Term Data

scholarly journals Type I SMA “new natural history”: long‐term data in nusinersen‐treated patients

2021 ◽  
Author(s):  
Marika Pane ◽  
Giorgia Coratti ◽  
Valeria A. Sansone ◽  
Sonia Messina ◽  
Michela Catteruccia ◽  
...  
Keyword(s):  
Natural History ◽  
Type I ◽  
Term Data

Reduction of major amputations in the diabetic ischaemic foot: A strategy to "take control" with conservative care as well as revascularisation

VASA ◽  
2001 ◽  
Vol 30 (Supplement 58) ◽  
pp. 6-14 ◽  
Author(s):  
Edmonds ◽  
Foster
Keyword(s):  
Natural History ◽  
Treatment Plan ◽  
Staging System ◽  
Vascular Control ◽  
New Approach ◽  
Conservative Care ◽  
Arterial Bypass ◽  
Therapeutic Footwear ◽  
Frequent Problem

The diabetic ischaemic foot has become an increasingly frequent problem over the last decade. However, we report a new approach consisting of a basic classification, a simple staging system of the natural history and a treatment plan for each stage, within a multi-disciplinary framework. This approach of "taking control" consists of two parts: 1. long-term conservative care including debridement of ulcers (to obtain wound control), eradication of sepsis (micribiological control), and provision of therapeutic footwear (mechanical control), and 2. revascularisation by angioplasty and arterial bypass (vascular control). This approach has led to a 50% reduction in the rate of major amputations in patients attending with ischaemic ulceration and absent foot pulses from 1989 to 1999 (from 4.6% to 2.3% per year). Patients who underwent angioplasty increased from 6% to 13%. Arterial bypass similarly increased from 3% to 7% of cases. However, even with an increased rate of revascularisation, 80% of patients responded to conservative care alone. This,we conclude, is an essential part of the management of all patients with ischaemic feet.

The natural history of pituitary apoplexy: long term follow-up study

2019 ◽  
Author(s):  
Ayesha Shaikh ◽  
Natasha Shrikrishnapalasuriyar ◽  
Giselle Sharaf ◽  
David Price ◽  
Maneesh Udiawar ◽  
...  
Keyword(s):  
Natural History ◽  
Pituitary Apoplexy ◽  
Follow Up Study ◽  
Long Term Follow Up ◽  
History Of
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