Evidence map›Paper›PMID 36861041›Full record

ReviewTherapeutic advances in drug safety2023

Patient-centered pharmacovigilance: priority actions from the inherited bleeding disorders community.

Fiona Robinson, Sonji Wilkes, Nathan Schaefer, Miriam Goldstein, Michelle Rice, Johanna Gray, Sharon Meyers, Leonard A Valentino

Open access · goldAbstract readReview
In one paragraph

Review in Therapeutic advances in drug safety, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
1.2field-weighted citation impact, top 20% of its field
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

1 citing paper in PubMed, 4 citations in OpenAlex.

  1. Pharmacovigilance and Appropriate Drug Use.Healthcare (Basel, Switzerland) · 2024
    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

8 authors at 3 institutions in 2 countries.

Fiona RobinsonCommunications, Montréal, QC, Canada.ORCID https://orcid.org/0000-0003-4286-271X
Sonji WilkesHemophilia Federation of America, Washington, DC, USA.
Nathan SchaeferNational Hemophilia Foundation, New York, NY, USA.
Miriam GoldsteinHemophilia Federation of America, Washington, DC, USA.
Michelle RiceNational Hemophilia Foundation, New York, NY, USA.
Johanna GrayArtemis Policy Group, Washington, DC, USA.
Sharon MeyersHemophilia Federation of America, Washington, DC, USA.
Leonard A ValentinoNational Hemophilia Foundation, 7 Penn Plaza, Suite 102, New York, NY 1001, USA.
Hemophilia Federation of America · USNational Hemophilia Foundation · USCommunications Research Centre Canada · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Pharmacovigilance, the science and practice of monitoring the effects of medicinals and their safety, is the responsibility of all stakeholders involved in the development, manufacture, regulation, distribution, prescription, and use of drugs and devices. The patient is the stakeholder most impacted by and the greatest source of information on safety issues. It is rare, however, for the patient to take a central role and exert leadership in the design and execution of pharmacovigilance. Patient organizations in the inherited bleeding disorders community are among the most established and empowered, particularly in the rare disorders. In this review, two of the largest bleeding disorders patient organizations, Hemophilia Federation of America (HFA) and National Hemophilia Foundation (NHF), offer insights into the priority actions required of all stakeholders to improve pharmacovigilance. The recent and ongoing increase in incidents raising safety concerns and a therapeutic landscape on the cusp of unprecedented expansion heighten the urgency of a recommitment to the primacy of patient safety and well-being in drug development and distribution. Plain Language Summary:

Indexed as

advocacycommunitydrug safetyinherited bleeding disorderspatient safetypharmacovigilancepostmarketing surveillance

Identifiers

PMID36861041
PMCPMC9969430
OpenAlexW4321850279

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.