Diffuse scleroderma

Common Name(s)

Diffuse scleroderma, Diffuse systemic sclerosis

Diffuse scleroderma is a type of scleroderma characterized as a systemic (internal) chronic connective tissue disease that is visible through the hardening of the skin (please also see: Scleroderma).

Scleroderma can be diffuse or limited. In diffuse scleroderma, skin thickening and hardening occurs more rapidly and involves more skin areas than in limited disease. Skin of the arms, legs, and trunk are more likely to be involved. The tightened skin makes it difficult to bend fingers, hands, and other joints. There is sometimes inflammation of the joints, tendons and muscles. Tight skin on the face can reduce the size of a person’s mouth and increases the importance of good dental care. Skin may gain or lose pigment (color) creating light and dark patches. In addition, people with diffuse scleroderma have a higher risk of developing “sclerosis” or fibrous hardening of the internal organs such as the heart, lungs and kidneys. The amount of organ involvement is highly variable; some individuals have no organ involvement while others may be severely affected. Scleroderma can develop in every age group from infants to the elderly, but its onset is most frequent between the ages of 25 to 55 and affects females more frequently than males.

The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require blood studies and numerous other specialized tests. Specific organ and skin treatments are available. Treatments range from anti-inflammatory medications, immunosuppressive therapy, drug therapy of vascular disease, and anti-fibrotic agents. If you or a loved one has been diagnosed with diffuse scleroderma, talk to your doctor about the most current treatment options. Support groups are also a good source of information and support.

Source: Advocacy organizations associated with the condition.

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Advocacy and Support Organizations Health Questions Recommended Apps Scientific Literature Symptoms, Diagnosis, and Treatment Clinical Trial Information
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Diffuse scleroderma" for support, advocacy or research.

International Scleroderma Network

Our mission is to provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses.

Last Updated: 18 Apr 2010

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Raynaud's & Scleroderma Ireland

• To improve the lives of patients, their families and carers by providing support, advice and information. • To increase the awareness of Raynaud’s and Scleroderma amongst healthcare professionals, Government and Statutory agencies and the general public. • To work in partnership with appropriate healthcare professionals and agencies to promote and co-ordinate the attainment of the objectives of the strategy. • Maintain a working environment that fosters communication, teamwork and diversity among all members of staff- permanent, temporary and voluntary

Last Updated: 6 May 2014

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General Support Organizations

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How do you compare to others with this condition?

Privately answer questions about your health. Let resources, you select, come to you.

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

 
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Diffuse scleroderma" for support, advocacy or research.

International Scleroderma Network

Our mission is to provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses.

http://www.sclero.org/

Last Updated: 18 Apr 2010

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Raynaud's & Scleroderma Ireland

• To improve the lives of patients, their families and carers by providing support, advice and information. • To increase the awareness of Raynaud’s and Scleroderma amongst healthcare professionals, Government and Statutory agencies and the general public. • To work in partnership with appropriate healthcare professionals and agencies to promote and co-ordinate the attainment of the objectives of the strategy. • Maintain a working environment that fosters communication, teamwork and diversity among all members of staff- permanent, temporary and voluntary

http://www.irishraynauds.com

Last Updated: 6 May 2014

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General Support Organizations

Not finding the support you need? Show General Support Organizations

 
 
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Recommended Apps

Privately answer questions about your health. Let resources, you select, come to you

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

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Relief is when you and the right researcher find each other

Finding the right clinical trial for Diffuse scleroderma can be challenging. However, with TrialsFinder (which uses the Reg4ALL database and privacy controls by Private Access), you can permit researchers to let you know opportunities to consider - all without revealing your identity.

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Diffuse scleroderma" returned 24 free, full-text research articles on human participants. First 3 results:

Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study.
 

Author(s): Sébastien Peytrignet, Christopher P Denton, Mark Lunt, Roger Hesselstrand, Luc Mouthon, Alan Silman, Xiaoyan Pan, Edith Brown, László Czirják, Jörg H W Distler, Oliver Distler, Kim Fligelstone, William J Gregory, Rachel Ochiel, Madelon Vonk, Codrina Ancuta, Voon H Ong, Dominique Farge, Marie Hudson, Marco Matucci-Cerinic, Alexandra Balbir-Gurman, Øyvind Midtvedt, Alison C Jordan, Wendy Stevens, Pia Moinzadeh, Frances C Hall, Christian Agard, Marina E Anderson, Elisabeth Diot, Rajan Madhok, Mohammed Akil, Maya H Buch, Lorinda Chung, Nemanja Damjanov, Harsha Gunawardena, Peter Lanyon, Yasmeen Ahmad, Kuntal Chakravarty, Søren Jacobsen, Alexander J MacGregor, Neil McHugh, Ulf Müller-Ladner, Gabriela Riemekasten, Michael Becker, Janet Roddy, Patricia E Carreira, Anne Laure Fauchais, Eric Hachulla, Jennifer Hamilton, Murat Inanç, John S McLaren, Jacob M van Laar, Sanjay Pathare, Susanna Proudman, Anna Rudin, Joanne Sahhar, Brigitte Coppere, Christine Serratrice, Tom Sheeran, Douglas J Veale, Claire Grange, Georges-Selim Trad, Ariane L Herrick

Journal: Rheumatology (Oxford). 2018 02;57(2):370-381.

 

Our aim was to describe the burden of early dcSSc in terms of disability, fatigue and pain in the European Scleroderma Observational Study cohort, and to explore associated clinical features.

Last Updated: 31 Dec 1969

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Treatment outcome in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study (ESOS).
 

Author(s): Ariane L Herrick, Xiaoyan Pan, Sébastien Peytrignet, Mark Lunt, Roger Hesselstrand, Luc Mouthon, Alan Silman, Edith Brown, László Czirják, Jörg H W Distler, Oliver Distler, Kim Fligelstone, William J Gregory, Rachel Ochiel, Madelon Vonk, Codrina Ancuţa, Voon H Ong, Dominique Farge, Marie Hudson, Marco Matucci-Cerinic, Alexandra Balbir-Gurman, Øyvind Midtvedt, Alison C Jordan, Paresh Jobanputra, Wendy Stevens, Pia Moinzadeh, Frances C Hall, Christian Agard, Marina E Anderson, Elisabeth Diot, Rajan Madhok, Mohammed Akil, Maya H Buch, Lorinda Chung, Nemanja Damjanov, Harsha Gunawardena, Peter Lanyon, Yasmeen Ahmad, Kuntal Chakravarty, Søren Jacobsen, Alexander J MacGregor, Neil McHugh, Ulf Müller-Ladner, Gabriela Riemekasten, Michael Becker, Janet Roddy, Patricia E Carreira, Anne Laure Fauchais, Eric Hachulla, Jennifer Hamilton, Murat İnanç, John S McLaren, Jacob M van Laar, Sanjay Pathare, Susannah Proudman, Anna Rudin, Joanne Sahhar, Brigitte Coppere, Christine Serratrice, Tom Sheeran, Douglas J Veale, Claire Grange, Georges-Selim Trad, Christopher P Denton

Journal: Ann. Rheum. Dis.. 2017 Jul;76(7):1207-1218.

 

The rarity of early diffuse cutaneous systemic sclerosis (dcSSc) makes randomised controlled trials very difficult. We aimed to use an observational approach to compare effectiveness of currently used treatment approaches.

Last Updated: 31 Dec 1969

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[Diffuse interstitial pneumonia revealing systemic sclerosis sine scleroderma].
 

Author(s): Lilia Baili, Zohra Aydi, Imene Rachdi, Besma Ben Dhaou, Fatma Boussema, Lilia Rokbani

Journal: Tunis Med. 2014 Jul;92(7):508-10.

 

Last Updated: 31 Dec 1969

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To view other free, full-text articles on human participants, please click on the link below.

PubMed Article Results at NCBI: 24 article(s)

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Diffuse scleroderma" returned 0 free, full-text review articles on human participants.

No free, full-text review articles on human participants are available at this time. Please click this link to visit the PubMed website for results on "Diffuse scleroderma".

 
 
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Symptoms, Diagnosis, and Treatment

This information is provided by Genetics Home Reference.
https://ghr.nlm.nih.gov/condition/systemic-scleroderma
https://ghr.nlm.nih.gov/condition/hereditary-diffuse-gastric-cancer
https://ghr.nlm.nih.gov/gene/XYLT2
https://ghr.nlm.nih.gov/gene/IRF5
https://ghr.nlm.nih.gov/gene/STAT4
https://ghr.nlm.nih.gov/gene/TMEM231
https://ghr.nlm.nih.gov/gene/GJA5
https://ghr.nlm.nih.gov/gene/NUP107
https://ghr.nlm.nih.gov/gene/COL4A6
https://ghr.nlm.nih.gov/gene/BCL6
https://ghr.nlm.nih.gov/gene/PLCE1
https://ghr.nlm.nih.gov/condition/lennox-gastaut-syndrome
https://ghr.nlm.nih.gov/condition/adult-onset-leukoencephalopathy-with-axonal-spheroids-and-pigmented-glia
https://ghr.nlm.nih.gov/condition/alpers-huttenlocher-syndrome
https://ghr.nlm.nih.gov/condition/congenital-hyperinsulinism
https://ghr.nlm.nih.gov/condition/denys-drash-syndrome
https://ghr.nlm.nih.gov/condition/fibromyalgia
https://ghr.nlm.nih.gov/condition/graves-disease
https://ghr.nlm.nih.gov/about/support-advocacy-groups
https://ghr.nlm.nih.gov/condition/noonan-syndrome-with-multiple-lentigines
Full Results at Genetics Home Reference: 35 matches

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Atorvastatin for Microvascular Endothelial Function and Raynaud in Early Diffuse Scleroderma
 

Status: Recruiting

Condition Summary: Scleroderma

 

Last Updated: 13 Mar 2018

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Evaluation of Tofacitinib in Early Diffuse Cutaneous Systemic Sclerosis (dcSSc)
 

Status: Recruiting

Condition Summary: Systemic Sclerosis; Scleroderma

 

Last Updated: 9 Oct 2017

Go to URL
Scleroderma Registry & Repository at the Hospital for Special Surgery
 

Status: Recruiting

Condition Summary: Scleroderma

 

Last Updated: 14 Mar 2018

Go to URL
According to ClinicalTrials.gov there are currently 80 additional "open" studies for "Diffuse scleroderma" (open studies are recruiting volunteers) and 332 "Diffuse scleroderma" studies with "all" status. Visit ClinicalTrials.gov now to view them. Or alternatively, consider TrialsFinder for assistance:
TrialsFinder Branding Graphics
Relief is when you and the right researcher find each other
Finding the right clinical trial for Diffuse scleroderma can be challenging. However, with TrialsFinder (which uses the Reg4ALL database and privacy controls by Private Access), you can permit researchers to let you know opportunities to consider - all without revealing your identity.
Learn More