Evidence map›Paper›PMID 36141212›Full record

ArticleHealthcare (Basel, Switzerland)2022

Making Sure That Orphan Incentives Tip the Right Way in Europe.

Denis Horgan, Jasmina Koeva-Balabanova, Ettore Capoluongo, Beata Jagielska, Ivana Cattaneo, Marta Kozaric, Birute Tumiene, Jean-Paul El Ahl, Jonathan A Lal, Dipak Kalra and 1 more

Abstract read
In one paragraph

Article in Healthcare (Basel, Switzerland), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Review
  2. Review
  3. Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Denis HorganEuropean Alliance for Personalised Medicine, 1040 Brussels, Belgium.
Jasmina Koeva-BalabanovaBulgarian Alliance for Precision and Personalized Medicine-BAPPM, 1618 Sofia, Bulgaria.
Ettore CapoluongoDepartment of Molecular Medicine and Medical Biotechnologies, University of Naples Federico II, 80131 Naples, Italy.
Beata JagielskaMaria Skłodowska-Curie National Research Institute of Oncology, 00-001 Warszawa, Poland.
Ivana CattaneoNovartis Farma SpA, 21040 Origgio, Italy.
Marta KozaricEuropean Alliance for Personalised Medicine, 1040 Brussels, Belgium.
Birute TumieneVilnius University Hospital Santariskiu Klinikos, 08661 Vilnius, Lithuania.ORCID 0000-0001-6010-2584
Jean-Paul El AhlMerck nv/sa, 1040 Brussels, Belgium.
Jonathan A LalDepartment of Molecular and Cellular Engineering, Jacob Institute of Biotechnology and Bioengineering, Faculty of Engineering and Technology, Sam Higginbottom University of Agriculture, Technology and Sciences, Prayagraj 211007, India.
Dipak KalraDepartment of Medical Informatics and Statistics, University of Ghent, 9000 Ghent, Belgium.
Núria MalatsSpanish National Cancer Research Centre (CNIO), 28029 Madrid, Spain.ORCID 0000-0003-2538-3784

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

The delicate balance of funding research and development of treatments for rare disease is only imperfectly achieved in Europe, and even the current provisional equilibrium is under a new threat from well-intentioned policy changes now in prospect that could-in addition to the intrinsic complexities of research-reduce the incentives on which commercial activity in this area is dependent. The European Union review of its pharmaceutical legislation, for which proposals are scheduled to appear before the end of 2022, envisages adjusting the decade-old incentives to meet objectives that are more precisely targeted. However, researchers, physicians, patients and industry have expressed concerns that ill-considered modifications could have unintended consequences in disrupting the current balance and could reduce rather than increase the flow of innovative treatments for rare diseases.

Indexed as

drug developmentEU regulationincentivesorphan medicinespatientspharmaceutical strategypolicy frameworkrare diseasesregulation

Identifiers

PMID36141212
PMCPMC9498781

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.