Evidence map›Paper›PMID 39187744›Full record

Observational studyClinical rheumatology2024

Internet-based enrollment of a myositis patient cohort-a national experience.

Raisa Lomanto Silva, Shiri Keret, Tanya Chandra, Akanksha Sharma, Nantakarn Pongtarakulpanit, Siamak Moghadam-Kia, Chester V Oddis, Rohit Aggarwal

Abstract readObservational Study
PubMed Publisher
In one paragraph

Observational study in Clinical rheumatology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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.

Raisa Lomanto SilvaInternal Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA, USA.ORCID http://orcid.org/0000-0002-2830-7675
Shiri KeretFaculty of Medicine, Rheumatology, Bnai-Zion Medical Center, Technion, Haifa, Israel.
Tanya ChandraDivision of Rheumatology and Clinical Immunology, Arthritis and Autoimmunity Center, University of Pittsburgh Medical Center, Pittsburgh, PA, USA.
Akanksha SharmaInternal Medicine, University of Pittsburgh Medical Center Mercy Hospital, Pittsburgh, PA, USA.
Nantakarn PongtarakulpanitDivision of Allergy, Immunology and Rheumatology, Department of Medicine, Faculty of Medicine Ramathibodi Hospital, Mahidol University, Bangkok, Thailand.
Siamak Moghadam-KiaDivision of Rheumatology and Clinical Immunology, Arthritis and Autoimmunity Center, University of Pittsburgh Medical Center, Pittsburgh, PA, USA.
Chester V OddisDivision of Rheumatology and Clinical Immunology, Arthritis and Autoimmunity Center, University of Pittsburgh Medical Center, Pittsburgh, PA, USA.
Rohit AggarwalDivision of Rheumatology and Clinical Immunology, Arthritis and Autoimmunity Center, University of Pittsburgh Medical Center, Pittsburgh, PA, USA. aggarwalr@upmc.edu.

Funding

Foundation for the National Institutes of Health 0045143600000
6 · The paper itself

Abstract

introductionRecruitment for idiopathic inflammatory myopathies (IIM) research is a challenge due to the rarity of the disease and the scarcity of specialized myositis centers. Online recruitment may be a feasible alternative to reach rare disease patients. We evaluated various online recruitment methods in a large longitudinal IIM cohort.

methodsThe "Myositis Patient Centered Tele-Research" (My Pacer) is a prospective 6-month observational study of IIM, recruited online and through traditional clinic visits. We utilized diverse recruitment methods, such as physician referrals, social media, websites, direct emails, and partnerships with patient-support organizations. Participants self-enrolled and completed pre-screening, e-consenting, and release of medical information via the study-specific app or website. We compared the effectiveness of various recruitment and enrollment methods and the characteristics of the population recruited.

resultsA total of 841 participants completed the pre-screening; 408 completed e-consent and registration. From those, 353 (86.5%) were remotely recruited. Email (201; 49.26%) and social media (77; 18.87%) were important recruitment tools. Patient-support organizations were responsible for disseminating the study to 312 (75.46%) participants. The study app was used by 232 (65.72%) individuals for enrollment, with app users being slightly younger than website users (p = 0.001). Participants were mostly female 317 (77.76%), mean age of 54.84 years, White 328 (80.42%), Black 49 (12%), Asian 13 (3.26%), and non-Hispanic 378 (92.65%). Our study reached all U.S. regions and 45 (90%) U.S. states.

conclusionsSocial media and partnerships with patient-support organizations lead to a high rate of recruitment, with a wide reach, and a reasonably diverse population.

Indexed as

InternetMyositisPatient SelectionAdultAgedElectronic MailFemaleHumansMaleMiddle AgedProspective StudiesSocial MediaUnited StatesFacebookMyositisRecruitmentSocial media

Identifiers

PMID39187744

What OpenQuestion holds

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Registered trials

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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.