Evidence map›Paper›PMID 37685481›Full record

ArticleHealthcare (Basel, Switzerland)2023

Activities of Clinical Expertise and Research in a Rare Disease Referral Centre: A Place for Telemedicine beyond the COVID-19 Pandemic?

Quentin Ducrocq, Laurence Guédon-Moreau, David Launay, Louis Terriou, Sandrine Morell-Dubois, Hélène Maillard, Guillaume Lefèvre, Vincent Sobanski, Marc Lambert, Cécile Yelnik and 4 more

Open access · goldAbstract read
In one paragraph

Article in Healthcare (Basel, Switzerland), 2023. 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
0.6field-weighted citation impact, top 23% 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

0 citing papers in PubMed, 2 citations in OpenAlex.

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

14 authors at 4 institutions in 1 country.

Quentin DucrocqCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.ORCID 0009-0002-4573-1934
Laurence Guédon-MoreauUniversité de Lille, Faculté de Médecine et CHU de Lille, Clinique de Cardiologie et Maladies Vasculaires, F-59000 Lille, France.
David LaunayCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.ORCID 0000-0003-1840-1817
Louis TerriouCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.
Sandrine Morell-DuboisCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.
Hélène MaillardCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.
Guillaume LefèvreUniv. Lille, U1286-INFINITE-Institute for Translational Research in Inflammation, F-59000 Lille, France.
Vincent SobanskiCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.
Marc LambertCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.
Cécile YelnikCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.
Meryem-Maud FarhatCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.
Maria José Garcia FernandezUnité Matériaux et Transformations (UMET) UMR CNRS 8207, Université Lille 1, F-59655 Villeneuve d'Ascq, France.ORCID 0000-0003-1918-616X
Eric HachullaCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.
Sébastien SangesCHU Lille, Service de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes Systémiques Rares du Nord et Nord-Ouest de France (CeRAINO), F-59000 Lille, France.ORCID 0000-0003-0280-411X
Inserm · FRCentre Hospitalier Universitaire de Lille · FRCentre National de la Recherche Scientifique · FRUniversité de Lille · FR

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionRare disease referral centres are entrusted with missions of clinical expertise and research, two activities that have to contend with numerous obstacles. Providing specialist opinions is time-consuming, uncompensated and limited by difficulties in exchanging medical data. Clinical research is constrained by the need for frequent research protocol visits. Our objective was to determine whether telemedicine (TLM) can overcome these difficulties.

methodsTo better characterise the activity of clinical expertise provided by our French centre, each opinion delivered by our team was reported on a standardised form. To investigate our clinical research activity, investigators and patients were asked to complete a questionnaire on the acceptability of research protocol teleconsultations.

resultsRegarding clinical expertise, our team delivered 120 opinions per week (representing a total of 21 h), of which 29% were delivered to patients and 69% to medical practitioners. If these were delivered using TLM, it would represent a potential weekly income of EUR 500 (tele-expertise) and EUR 775 (teleconsultations). Regarding the research activity, 70% of investigators considered the frequency of visits to be a limiting factor for patient inclusions; nearly half of the patients surveyed would be in favour of having teleconsultations in place of (40%) or in addition to (56%) in-person visits.

conclusionWhereas TLM has become widely used as a back-up procedure to in-person consultations during the COVID-19 pandemic, the solutions it provides to the problems encountered in performing expertise and research activities have made it a new conventional follow-up modality for patients with rare diseases.

Indexed as

auto-immune diseasesclinical researchclinical trialrare diseasesreferral centreteleconsultationtele-expertisetelehealthtelemedicinetele-trial

Identifiers

PMID37685481
PMCPMC10487162
OpenAlexW4386324440

What Socratic 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 Socratic graph.