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The RENAPE observational registry: rationale and framework of the rare peritoneal tumors French patient registry

Overview of attention for article published in Orphanet Journal of Rare Diseases, February 2017
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Title
The RENAPE observational registry: rationale and framework of the rare peritoneal tumors French patient registry
Published in
Orphanet Journal of Rare Diseases, February 2017
DOI 10.1186/s13023-017-0571-y
Pubmed ID
Authors

L. Villeneuve, G. Passot, O. Glehen, S. Isaac, F. Bibeau, P. Rousset, F. N. Gilly

Abstract

Rare peritoneal cancers represent complex clinical situations requiring a specific and multidisciplinary management. Because of their rarity, lack of awareness and knowledge often leads to diagnostic delays and misdiagnosis. And patients are not systematically referred to expert centers as they should be. Clinicians and researchers also face unique challenges with these rare cancers, because it is hard to conduct adequately powered, controlled trials in such small patient population. This is how an observational patient registry constitutes a key instrument for the development of epidemiological and clinical research in the field of these rare cancers. It is the appropriate tool to pool scarce data for epidemiological research and to assess the impact of diagnostic and therapeutic strategies. We aimed to provide the outlines and the framework of the RENAPE observational registry and share our experience in the establishment of a national patient registry. The RENAPE observational registry has been launched in 2010 thanks to institutional supports. It concerns only patients with a histological diagnosis confirming a peritoneal surface malignancy. A web secured clinical database has been implemented based on data management procedures according to the principles of international recommendations and regulatory statements. A virtual tumor bank is linked in order to the conduct translational studies. Specialized working groups have been established to continuously upgrade and evolve the common clinical and histological data elements following the last classifications and clinical practices. They contribute also to standardize clinical assessment and homogenize practices. The RENAPE Registry may improve awareness and understanding of the rare peritoneal tumors into the incidence, prevalence, recurrence, survival and mortality rates, as well as treatment practices thereby enabling therapeutic intervention to be evaluated and ultimately optimized. ClinicalTrials.gov Identifier: NCT02834169.

Twitter Demographics

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Mendeley readers

The data shown below were compiled from readership statistics for 33 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 33 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 4 12%
Researcher 4 12%
Student > Doctoral Student 4 12%
Student > Bachelor 3 9%
Student > Ph. D. Student 3 9%
Other 8 24%
Unknown 7 21%
Readers by discipline Count As %
Medicine and Dentistry 11 33%
Nursing and Health Professions 3 9%
Business, Management and Accounting 3 9%
Biochemistry, Genetics and Molecular Biology 2 6%
Agricultural and Biological Sciences 2 6%
Other 5 15%
Unknown 7 21%

Attention Score in Context

This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 01 March 2017.
All research outputs
#6,962,524
of 9,134,189 outputs
Outputs from Orphanet Journal of Rare Diseases
#1,000
of 1,189 outputs
Outputs of similar age
#187,243
of 254,168 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#45
of 61 outputs
Altmetric has tracked 9,134,189 research outputs across all sources so far. This one is in the 13th percentile – i.e., 13% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,189 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.7. This one is in the 8th percentile – i.e., 8% of its peers scored the same or lower than it.
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We're also able to compare this research output to 61 others from the same source and published within six weeks on either side of this one. This one is in the 18th percentile – i.e., 18% of its contemporaries scored the same or lower than it.