Evidence map›Paper›PMID 37425399›Full record

ReviewTranslational lung cancer research2023

Patient-led advocacy in ALK-positive lung cancer.

Colin Barton, Morhaf Al Achkar, Jennifer A Blender, Summer Hall Farmen, Raymond B Hall, Afroditi Maria Konidari, Debbi Martinez, Nancee Pronsati, Marc Rosenzweig, Carla Vass and 3 more

Open access · diamondAbstract readReview
In one paragraph

Review in Translational lung cancer research, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
1.3field-weighted citation impact, top 18% 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

3 citing papers in PubMed, 5 citations in OpenAlex.

  1. Article
  2. Observational
  3. 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

13 authors at 2 institutions in 1 country.

Colin BartonALK Positive Inc., Atlanta, GA, USA.
Morhaf Al AchkarALK Positive Inc., Atlanta, GA, USA.
Jennifer A BlenderALK Positive Inc., Atlanta, GA, USA.
Summer Hall FarmenALK Positive Inc., Atlanta, GA, USA.
Raymond B HallALK Positive Inc., Atlanta, GA, USA.
Afroditi Maria KonidariALK Positive Inc., Atlanta, GA, USA.
Debbi MartinezALK Positive Inc., Atlanta, GA, USA.
Nancee PronsatiALK Positive Inc., Atlanta, GA, USA.
Marc RosenzweigALK Positive Inc., Atlanta, GA, USA.
Carla VassALK Positive Inc., Atlanta, GA, USA.
Emily S VenanziALK Positive Inc., Atlanta, GA, USA.
William WestlakeALK Positive Inc., Atlanta, GA, USA.
Marc A T MuskavitchALK Positive Inc., Atlanta, GA, USA.
Positive Impact · USPositive Action · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Patient-led advocacy organizations in the anaplastic lymphoma kinase (ALK)-positive lung cancer space are becoming increasingly influential. ALK Positive Inc. (hereafter "ALK Positive") is probably the most widely known among these organizations. Evolving from a private Facebook Support Group created in 2015 to provide a forum for ALK-positive lung cancer patients and caregivers to exchange information, empathy and support, ALK Positive transitioned in 2021 into a 501(c)(3) non-profit organization (NPO), with the mission to improve the life expectancy and quality of life for ALK-positive cancer patients worldwide. This review provides a historical perspective on the growth, activities and aspirations of ALK Positive to pursue patient advocacy and enable development of new therapies for individuals with ALK-positive cancers. This growth has been enabled by the collaborative efforts of ALK-positive cancer patients, their care-partners and oncologists, academic researchers, other NPO advocacy organizations, and members of the biotech and pharma communities who develop new therapies for ALK-positive cancers. ALK Positive has grown to provide a variety of patient services, to award competitive support for translational research and clinical trials intended to enable new therapies and improved quality and extent of life for ALK-positive cancer patients, and to collaborate with industry and academia to accelerate the development of improved therapies for ALK-positive cancer patients. ALK Positive continues grappling with a variety of challenges including further improving patient quality of life, enabling the development of new therapies, and extending its already substantial global reach and impact. This review summarizes many of the tangible impacts and aspirations engendered by ALK Positive for ALK-positive cancer patients in the past, present and future tenses-where we have been, where we stand and where we hope to go. The content is based on the historical recollections of the authors, and is accurate as of November 30, 2022, to the best of the authors' knowledge.

Indexed as

advocacyAnaplastic lymphoma kinase (ALK)lung cancer (LC)non-small cell lung cancer (NSCLC)patient

Identifiers

PMID37425399
PMCPMC10326769
OpenAlexW4382399959

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.