Evidence map›Paper›PMID 34376220›Full record

ArticleOrphanet journal of rare diseases2021

The GoodHope Ehlers Danlos Syndrome Clinic: development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital.

Nimish Mittal, Daniel Santa Mina, Laura McGillis, Aliza Weinrib, P Maxwell Slepian, Maxim Rachinsky, Stephanie Buryk-Iggers, Camille Laflamme, Laura Lopez-Hernandez, Laura Hussey and 16 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.

0numbers the graph read from it
0cells of the map it votes in
17citing 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

17 citing papers in PubMed.

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  16. Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review.Archives of rehabilitation research and clinical translation · 2022
    Review
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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

26 authors.

Nimish MittalGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada. Nimish.Mittal@uhn.ca.ORCID 0000-0002-6291-1956
Daniel Santa MinaGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Laura McGillisGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Aliza WeinribGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
P Maxwell SlepianGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Maxim RachinskyGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Stephanie Buryk-IggersGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Camille LaflammeGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Laura Lopez-HernandezGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Laura HusseyGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Joel KatzGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Lianne McLeanGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Dmitry RozenbergGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Louis LiuGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Yvonne TseGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Colleen ParkerGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Arnon AdlerGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
George CharamesGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Robert BleakneyJoint Department of Medical Imaging, University of Toronto, Toronto, ON, Canada.
Christian VeilletteDepartment of Surgery, Division of Orthopedics, University of Toronto, Toronto, ON, Canada.
Christopher J NielsonDepartment of Surgery, Division of Orthopedics, University of Toronto, Toronto, ON, Canada.
Sandra TavaresGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Stephanie VarrianoGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Juan GuzmanGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Hanna FaghfouryGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Hance ClarkeGoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Ehlers-Danlos Syndrome (EDS) are a heterogeneous group of genetic connective tissue disorders, and typically manifests as weak joints that subluxate/dislocate, stretchy and/or fragile skin, organ/systems dysfunction, and significant widespread pain. Historically, this syndrome has been poorly understood and often overlooked. As a result, people living with EDS had difficulty obtaining an accurate diagnosis and appropriate treatment, leading to untold personal suffering as well as ineffective health care utilization. The GoodHope EDS clinic addresses systemic gaps in the diagnosis and treatment of EDS. This paper describes a leap forward-from lack of awareness, diagnosis, and treatment-to expert care that is tailored to meet the specific needs of patients with EDS. The GoodHope EDS clinic consists of experts from various medical specialties who work together to provide comprehensive care that addresses the multi-systemic nature of the syndrome. In addition, EDS-specific self-management programs have been developed that draw on exercise science, rehabilitation, and health psychology to improve physical and psychosocial wellbeing and overall quality of life. Embedded into the program are research initiatives to shed light on the clinical presentation, underlying mechanisms of pathophysiology, and syndrome management. We also lead regular educational activities for community health care providers to increase awareness and competence in the interprofessional management of EDS beyond our doors and throughout the province and country.

Indexed as

Connective Tissue DiseasesEhlers-Danlos SyndromeJoint InstabilityConnective TissueHospitals, GeneralHumansQuality of LifeConnective tissue disordersDiagnosis and treatmentEhlers Danlos SyndromeHypermobility spectrum disorders

Identifiers

PMID34376220
PMCPMC8353438

What OpenQuestion holds

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LicenceCC BY
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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.