#ledderhose

[tenth-sentence]

'But peace is coming.'

"The Way Back" - Erich Maria Remarque

[jcmicr]

A rare case of bilateral plantar fibromatosis (Ledderhose’s disease): A case report by Amrutha Viswanath in Journal of Clinical and Medical Images, Case Reports  

Abstract

Ledderhose’s disease, also known as plantar fibromatosis is a rare, benign hyperproliferative disorder affecting plantar fascia with unknown etiology. Clinical presentation of the disease varies according to the stage of the disease and individual characteristics. Diagnosis of the disease is usually based on clinical findings. Histopathological examination, Ultrasound or MRI can be used to rule out other conditions and for confirmation of the disease. Plantar fibromatosis can mimic the features of plantar fasciitis especially in early stages of the disease, hence it should be considered as a differential diagnosis in patients with pain and nodules in plantar aspect of foot. In this case report, we present a case of 24-year-old male with bilateral plantar fibromatosis, which was managed by surgical excision of the nodules due to unresponsive conservative management.

Keywords: Plantar fibromatosis; ledderhose’s disease; heel pain; nodular swelling; plantar fasciitis.

Introduction

Plantar fibromatosis or Ledderhose disease, is a rare benign pathology of the plantar aponeurosis, first described by Dr. George Ledderhose. It is characterised by disordered fibrous tissue proliferation and the subsequent formation of lump or nodules over the plantar aspect of the foot. The Office of Rare Diseases of the National Institutes of Health listed it as a rare disease with frequency about 1–1.75/100,000 [1]. Although etiology of plantar fibromatosis is unknown, it is associated with Dupuytren’s disease (palmar fibromatosis), Peyronie’s disease (penile fibromatosis) [2]. Increased risk of its occurrence is associated with alcoholism, chronic liver disease, diabetes mellitus, long term anticonvulsive treatment for epilepsy and genetic factors [3]. Males are more commonly affected than females. 25% of cases with plantar fibromatosis present with bilateral disease [4]. Diagnosis of Ledderhose’s disease is usually established clinically. Initially the nodule is asymptomatic and it becomes symptomatic as it enlarges in size. Direct pressure on the nodule while walking barefoot, standing for long periods of time and use of restrictive shoes may exacerbate pain and walking disability. Over time, multiple nodules may develop and can cause exacerbation of symptoms, contractures and deformities [5]. Given the benign nature, initial phase of the disease can be managed conservatively and if symptoms persist, definitive management of surgical excision of nodule gives complete relief of symptoms. The nodular swellings affecting the plantar fascia is of greater significance in population with poor socioeconomic status as people prefer to walk barefoot in developing countries.

The similarities of plantar fibromatosis to Dupuytren's disease affecting palmar fascia support the theory that, two conditions are different expressions of the same disorder [6]. Even though much has been discussed about Dupuytren's contracture in the literature; only very few literatures are available regarding plantar fibromatosis. In this case report, we present a case of 24-year-old male with bilateral plantar fibromatosis and aims to discuss the clinical presentation and various management options in plantar fibromatosis.

Case Report

A 24-year-old male presented to our department with dull aching type of pain over the plantar aspect of both feet of 1-year duration. Pain prevented the patient from weight-bearing for long time and walking for small distances. There was no significant familial history of the disease or history of any associated trauma. No associated medical history in the patient. Patient gives history of treatment in another hospital as bilateral plantar fasciitis. Conservative management was given there in the form of analgesics, anti-inflammatory drugs, advice to use footwear with soft insole and gives a history of 3 steroid injections administered 4-6 weeks apart. With persistence of symptoms patient came to our department. On physical examination small, well circumscribed, palpable, firm, nodular, single swelling was present over the medial plantar aspect of his both feet. The swellings measured about 2 x 1.5 cm on the right foot and 1 x 1 cm on the left foot. The skin over the swellings appeared normal and there were no neurovascular deficits or deformities. Ankle joint and foot range of movements were within normal range. On further examination, we found a similar swelling of size 0.5 x 0.5 cm on the palmar aspect of right hand with no restriction of movements and clinical signs. FNAC report showed mild to moderately cellular oval to plumb spindle shaped fibroblastic cells with elongated nuclei arranged in clusters and dispersed pattern associated with myxoid matrix. Cytology findings were suggestive of benign fibroblastic lesion. A provisional diagnosis of bilateral plantar fibromatosis was made, based on clinical and cytological findings. Since conservative management was tried earlier and there was persistence of symptoms and limitation in function surgical excision of the nodules was planned. Surgery was performed under spinal anesthesia. Nodules on both sides were palpated and skin over it was marked for surgical incision. The dissection of skin and soft tissue exposed the nodules on both sides, which were greyish white in colour, firm in consistency and attached to plantar fascia (Figure 3).

Figure 1: Nodular swelling on right foot (dot circle).

Figure 2: Dot circle indicating the nodular swelling on right palm.

Figure 3: Exposed nodule ( Right foot ) intraoperative image.

Figure 4: Excised nodule from right foot (greyish white, measuring 1x0.8x0.2 cm).

Figure 5: Excised nodule from left foot (greyish white to greyish brown, measuring 1.7x1.5x0.4 cm).

Excision of the nodules were done in both feet and primary wound closure was done. The patient was advised for non-weight bearing for 2 weeks and use of soft insole footwear thereafter for 2 weeks. Postoperative period was uneventful and sutures were removed after 2 weeks of surgery.

Figure 6: Postoperative wound before suture removal.

The histopathological examination of the excised nodules revealed spindle-shaped cells with abundant collagen in a fibrous stroma background and features were consistent with the diagnosis of bilateral plantar fibromatosis. On follow up of 6 months, patient reported complete relief of symptoms and improvement in function.

Figure 7: Photomicrograph of HPE slide showing nodular lesion composed of spindle shaped cells in a fibrous stroma background. (H&E staining, x40).

Figure 8: Photomicrograph of HPE slide showing spindle shaped cells with abundant collagen in fibrous stroma(H & E staining , x100).

Discussion

Ledderhose’s disease (Plantar fibromatosis) is a fibrous hyperproliferative pathology affecting the plantar fascia characterised by formation of nodules [7, 8]. The diagnosis of Ledderhose’s disease is usually established clinically and rarely require further investigations for confirmation [9]. Histopathological analysis and diagnostic imaging helps to differentiate between other lesions that can present with similar symptoms such as plantar fasciitis ( The most common disorder of plantar fascia), lipoma , ganglion cyst, leiomyoma, epithelioid sarcoma, rhabdomyosarcoma and liposarcoma [10, 11]. According to the clinical and pathological studies, plantar fibromatosis can be classified into three stages. The first (proliferative) stage of the disease is characterised by cellular proliferation and increased fibroblastic activity. The second stage of the disease which is the active phase is characterised by formation of nodules. It is followed by the third (residual) stage where collagen maturation and tissue contractures occur [11, 12]. Therefore the normal plantar fascia is replaced progressively by abnormal collagen fibres and can present at any stage of the disease with pain, nodule, walking difficulty, contractures or deformities of toes and the treatment is planned accordingly.

Patients presenting in the early stage of the disease with no or mild pain can be conservatively managed with padded shoes with soft insoles or custom offloading to redistribute the weight from the nodules, analgesics, anti-inflammatory drugs and intralesional steroid injections[10,13]. If left untreated, nodules may gradually increase in size and number which in rare cases may result in deformities of the toes due to contractures in later stages. In cases with persistence of symptoms after conservative management, lesions which are progressive, severe limitation of function and in advanced stages of the disease surgical management is considered as the last resort of treatment [14, 15].

The nodular swellings affecting the plantar fascia is of greater significance in developing countries with poor socioeconomic status as people prefer to walk barefoot. For the same reason, early surgical management is indicated for symptomatic cases in the developing countries.

Conclusion

The diagnosis of Ledderhose’s disease can be done clinically alone. Diagnostic imaging such as Ultrasound or MRI and histopathological examination may be used, to exclude other conditions and to rule out malignancies [16]. The treatment of the disorder is planned accordingly. Even though plantar fasciitis is the commonest disorder affecting plantar fascia, plantar fibromatosis should be considered as a differential diagnosis in patients presenting with pain and nodules in plantar aspect of foot as it can mimic the features of plantar fasciitis. The recommended treatment approach is to start with conservative management in early stages of the disease and perform surgical excision in unresponsive cases and advanced stages. But the best treatment plan is to establish a personalised approach depending on the individual characteristics, type of symptoms, stage of the disease and recurrence.

Authors Disclosures:

Funding / Grants: Nil.

In this study, there was no competing interests or financial benefits to the authors.

Details of any previous presentation of the research, manuscript, or abstract in any form: Not presented anywhere.

Acknowledgement:

Authors declare no conflict of interest.

In this case report, there is no financial benefits to the authors.

For more details : https://jcmimagescasereports.org/author-guidelines/ 

[dupuytrens-org]

/*! elementor - v3.23.0 - 15-07-2024 */ .elementor-widget-imagetext-align:center.elementor-widget-image adisplay:inline-block.elementor-widget-image a img[src$=".svg"]width:48px.elementor-widget-image imgvertical-align:middle;display:inline-block Running.   100 Miles.   Uphill.   In the Summer.   At 12,000 Feet.To Raise Awareness About Dupuytren And Help Fund Research For A Cure.Daniel Kinek is an ultramarathon runner. A former collegiate lacrosse player for the University of Michigan, he has been pushing himself to his limits for as long as he can remember. Daniel is running the Leadville 100 mile trail race on August 17, 2024 to raise awareness about Dupuytren Disease and the importance of research for a cure. The Leadville 100 trail run takes place in the rugged terrain of the Rocky Mountains, starting at 10,200 feet above sea level and going as high as 12,600 feet. It's an ultramarathon race. 100 miles. It's a prestigious race. Daniel is one of the lucky contestants to be accepted through the application lottery. It's a grueling race. Less than half of contestants complete it. It's a challenging race. In his run, Daniel will gain over 15,000 vertical feet while facing unpredictable weather, uneven terrain, and other adversities. It's an endurance race. His goal is to finish in less than 30 hours. Daniel is up for the challence. He's been training for this for nearly a year.  This is Daniel's motivation: "This is a physical and personal race for me because Dupuytren affects my family, including my mother and brother. My mom has the debiltating form of Dupuytren. It makes it difficult for her to do ordinary things we take for granted - holding things, cooking, brushing her teeth, shaking someone's hand. My mom's disease affects her hands and her feet. When the disease attacks the feet it is called Ledderhose. Unfortunately, there is no cure at this time. Dupuytren has disabled my mother who is a Registered Nurse and had a fulfilling career. I am hopeful that a cure is found before the same happens to my brother. I don't have any signs of Dupuytren in my hands. I am doing this for my family and other families. Beyond raising money for Dupuytren research, my goal is to help others become aware of how this disease affects people's lives."Daniel's mission and vision are those of the Dupuytren Research Group. Both have a vision of a cure for Dupuytren disease and related conditions. Both embrace a mission to do whatever it takes and as long as it takes to cross the finish line. Daniel is giving his all to help families affected by Dupuytren disease. Follow his lead. Invest in research to cure Dupuytren disease.

[stefanoligorio]

(via Medicina – Il morbo di Ledderhose.)

Medicina – Il morbo di Ledderhose.

[noradurstig]

i take back what i’ve said in the past, eponyms in medicine are good actually

[tvueberregional]

Hockenheim: Umzug in den Auchtergrund ist geglückt

Hockenheim: Umzug in den Auchtergrund ist geglückt In der Sitzung des Sozialausschusses der Stadt Hockenheim am 7. Juli zeigte sich erneut, wie eng abgestimmt die Zusammenarbeit des Deut-schen Roten Kreuzes (DRK) Kreisverband Mannheim mit der Stadtverwaltung Hockenheim ist. Aus aktuellem Anlass konnten während der Sitzung die Verantwortlichen des DRK einen Rückblick auf ihre Arbeit im Bereich Streetwork und der Wohnungslosenarbeit im Jahr 2021 geben sowie einen Ausblick auf die neue Ära im Quartier Auchtergrund gewähren. Seit circa acht Wochen ersetzt die neue Wohnungslosenunterkunft mit 30 Plätzen die Unterkunft im Hofweg. Zusätzlich sorgen Beratungsräume und ein Tages-treff für strukturgebende und inklusive Angebote im Quartier. Der Rückblick des DRK auf das Jahr 2021 zeigt, wie komplex und vielschichtig die Problematik von wohnungslosen Menschen für ihre Wohnungslosigkeit ist. Aufzuzählen sind hier Eigenbedarfskündi-gungen der Vermieter, Mietschulden, Umsetzung von Geflüchteten aus anderen Unterkünften, Einweisungen von Haftentlassenen, Jobverlust, Todesfälle oder Krankheiten von Familienmitgliedern und damit verbundene unstemmbare Mietkosten. Insgesamt 21 Menschen mit durchmischtem Alters- und Migrationshintergrund lebten vergangenes Jahr in der Unterkunft im Hofweg, die Mehrzahl davon schon mehr als drei Jahre. Durchschnittlich 10-20 individu-elle und bedarfsorientierte Beratungen pro Woche wurden in Ho-ckenheim durch Simon Massoth, den aufsuchenden Sozialarbeiter des DRK durchgeführt – die Schwerpunkte sind hier Vermittlung von Arbeit und Wohnraum gewesen, stets mit Einbezug lokaler Ko-operations- und Netzwerk-partnern wie der Arbeitsagentur, gesetzlichen Betreuenden oder Maßnahmen- und Bildungsträgern. „Die Ar-beit mit unseren Klienten, die oftmals seit Jahren keinen eigenen, festen Wohnsitz haben und sich in prekären Situationen befinden ist herausfordernd und anspruchsvoll, jedoch zeigen sich regelmäßig auch Erfolge in unserer ganzheitlichen Beratung und Betreuung“, berichtet Markus Unterländer, Leiter des DRK-Quartier Auchter-grund. 2021 konnten zwei Personen in eine Vollzeitstelle und zwei Personen in eine Teilzeitstelle vermittelt werden, ebenso konnten sieben obdachlose Menschen in eigene Wohnungen ziehen. Desgleichen engagiert arbeitete das DRK im Bereich der aufsuchenden Kinder- Jugendsozialarbeit (Streetwork) in Hockenheim. Dauerhaft und zuverlässig war hier Andreas Ledderhose als Streetworker ak-tiv und konnte erfolgreich in Konfliktsituationen vermitteln, tragfä-hige Beziehungen zu den jungen Menschen aufbauen, Einzelfallhilfe leisten oder Deeskalationsstrategien entwickeln. „Die 2021 pandemiebedingt ausgefallenen Präsenzveranstaltungen und strukturgebenden Angebote werden nun in den freundlichen und modernen Räumlichkeiten des DRK-Quartier Auchtergrund nachgeholt und intensiviert“, berichtet Christiane Springer, Geschäftsführerin DRK. Hier fanden in den letzten Wochen bereits die ersten Veranstaltungen im Bereich Arbeitsmarkt und Zeitmanagement statt. Das aktuelle Feedback nach dem herausfordernden Einzug in die Wohnungslosenunterkunft im Auchtergrund fiel seitens des DRK ebenfalls sehr positiv aus. Das gemütliche und moderne Wohnum-feld sowie die engmaschige und ganzheitliche Betreuung sowie Begleitung in der Unterkunft werden sehr gut und dankbar angenommen. Oberbürgermeister Marcus Zeitler betonte am Ende des Rück- und Ausblickes: „Wir als Kommune sehen, wie wichtig es ist wohnungs-lose und obdachlose Menschen in Hockenheim zu unterstützen und stehen voll und ganz hinter diesem Thema. Mit den neuen Einrich-tungen und Angeboten im Auchtergrund sind wir auf dem richtigen Weg.“ Foto: Stadtverwaltung Hockenheim Auf den Weg gebracht: Markus Unterländer (DRK Mannheim), Marcus Zeit-ler (Oberbürgermeister Hockenheim), Christiane Springer (DRK Mannheim) und Thomas Jakob-Lichtenberg (Bürgermeister Hockenheim) halten den Geschäftsbericht des Jahres 2021 in den Händen. Lesen Sie den ganzen Artikel

[moshpitsworld]

Recommendations for badass flats needed

I started wearing heels when I was around 18. A couple of years ago, I was diagnosed with Ledderhose disease. I'm 28, past two surgeries, and I know now I will never wear heels again and that it's time to give up. After years of struggle, I've decided to put my shoes up for an auction and donate the money I earn to charity.

​

Now, I obviously need new shoes. I am quite tall, and I wear a size 41 (10 in the US). Even though the heels made me ridiculously tall, I always felt like at least my feet didn't look like a pair of kayaks. I also think they look way more badass - here are some examples of shoes I would normally wear based on season/occasion:

https://preview.redd.it/jsz9xi9irhl61.png?width=285&format=png&auto=webp&s=b2f5b3d68899cabf0b9578577b7d969fab545ac1

https://preview.redd.it/ehk0tj9irhl61.png?width=452&format=png&auto=webp&s=80176e978c69756ce84eb4f9c5d6331bbb048653

https://preview.redd.it/no18cwairhl61.png?width=485&format=png&auto=webp&s=29133732636b317765018df3d60d01c35ca8fa9c

https://preview.redd.it/ppp6el9irhl61.png?width=472&format=png&auto=webp&s=70491ebd2025d12a306ec73f12584ef4a96668b0

If you thought these shoes looked badass, and you knew how to achieve the same/similar level of badassness minus the heels, please share with me your wisdoms!

submitted by /u/chvc666 [link] [comments]

source https://www.reddit.com/r/Shoes/comments/lzdvv3/recommendations_for_badass_flats_needed/

[tenth-sentence]

Up to now he has acted as an agent for Ledderhose, but now he wants to branch out on his own.

"The Way Back" - Erich Maria Remarque

[dupuytrens-org]

/*! elementor - v3.23.0 - 15-07-2024 */ .elementor-widget-imagetext-align:center.elementor-widget-image adisplay:inline-block.elementor-widget-image a img[src$=".svg"]width:48px.elementor-widget-image imgvertical-align:middle;display:inline-block Running.   100 Miles.   Uphill.   In the Summer.   At 12,000 Feet.To Raise Awareness About Dupuytren And Help Fund Research For A Cure.Daniel Kinek is an ultramarathon athlete. A former collegiate lacrosse player for the University of Michigan, he has been pushing himself to his limits for as long as he can remember. Daniel is running the Leadville 100 mile trail race on August 17, 2024 to raise awareness about Dupuytren Disease and the importance of research for a cure.The Leadville 100 trail run takes place in the rugged terrain of the Rocky Mountains, starting at 10,200 feet above sea level and going as high as 12,600 feet. It's an ultramarathon race. 100 miles. It's a prestigious race. Daniel is one of the lucky contestants to be accepted through the application lottery. It's a grueling race. Less than half of contestants complete it. It's a challenging race. In his run, Daniel will gain over 15,000 vertical feet while facing unpredictable weather, uneven terrain, and other adversities. It's an endurance race. His goal is to finish in less than 30 hours. Daniel is up for the challence. He's been training for this for nearly a year.   This is Daniel's motivation: "This is a physical and personal race for me because Dupuytren affects my family, including my mother and brother. My mom has the debiltating form of Dupuytren. It makes it difficult for her to do ordinary things we take for granted - holding things, cooking, brushing her teeth, shaking someone's hand. My mom's disease affects her hands and her feet. When the disease attacks the feet it is called Ledderhose. Unfortunately, there is no cure at this time. Dupuytren has disabled my mother who is a Registered Nurse and had a fulfilling career. I am hopeful that a cure is found before the same happens to my brother. I don't have any signs of Dupuytren in my hands. I am doing this for my family and other families. Beyond raising money for Dupuytren research, my goal is to help others become aware of how this disease affects people's lives."Daniel's mission and vision are those of the Dupuytren Research Group. Both have a vision of a cure for Dupuytren disease and related conditions. Both embrace a mission to do whatever it takes and as long as it takes to cross the finish line. Daniel is giving his all to help families affected by Dupuytren disease. Follow his lead. Invest in research to cure Dupuytren disease.

[stefanoligorio]

Alcuni articoli, di Stefano Ligorio, su: Salute, Prevenzione, Alimentazione, Medicina Generale, Farmaci…

Medicina – Consigli generali su come mantenere una buona salute e vivere -qualitativamente- più a lungo.

Medicina – Non può esserci prevenzione delle malattie senza una dieta sana ed equilibrata che sia ricca di cibi dai variegati colori.

Medicina – Il morbo di Ledderhose.

Medicina – Balanite, postite e balanopostite. Diagnosi, cause e cura.

Medicina – Fumi? Ascolta allora…

Medicina – I farmaci generici, detti anche equivalenti, sono identici ai farmaci di ‘marca’? Facciamo chiarezza…

Medicina – Impariamo a preservare denti e gengive.

Medicina – Reflusso laringo-faringeo. Diagnosi, cause e cura.

Medicina – Come vivere a lungo? – Come mantenere una buona salute?

(Medicina in breve) – I farmaci vanno assunti sempre e solo dietro attenta, e diligente, prescrizione medica tanto più nella previsione di un loro uso cronico.

(Medicina in breve) – Prevenzione: praticare, con costanza, attività motoria…

(Medicina in breve) – Per la rimozione dell’amalgama dentale è un preciso obbligo montare la diga di gomma…

(Medicina in breve) – Impariamo a usare correttamente e responsabilmente gli antibiotici…

(Medicina in breve) – Bisogna combattere, efficacemente, un eventuale proprio stato di obesità.

(Medicina in breve) – Diabete mellito di tipo 1 e di tipo 2.

(Medicina in breve) – Prevenzione ‘primaria’ e prevenzione ‘alternativa’…

(Medicina in breve) – Il fenomeno della prescrizione di terapie inappropriate…

(Medicina in breve) – L’importanza dell’assunzione di frutta selvatica nella propria dieta.

(Medicina in breve) – Piccoli consigli per i diabetici.

(Medicina in breve) – Dolore cronico e condizioni meteo…

(Medicina in breve) – I diabetici devono ridurre il più possibile lo stress…

(Medicina in breve) – Fare ‘su e giù’ con il peso è inutile e finanche dannoso.

(Medicina in breve) – Attenzione all’uso prolungato degli inibitori di pompa protonica.

(Medicina in breve) – Attività fisica e funzioni cognitive negli anziani…

(Medicina in breve) – La figura dell’odontoiatra in Italia.

(Medicina in breve) – I comuni farmaci antinfiammatori sono, in genere, quasi del tutto inutili contro il mal di schiena.

(Medicina in breve) – Chirurgia del piede e della caviglia – Il dott. Giovanni Maselli.

(Medicina in breve) – I benefici dell’assunzione giornaliera di cacao amaro in polvere.

[bilgitorbasi-blog]

Ledderhose disease: Treatments, diet, and surgery

Ledderhose disease: Treatments, diet, and surgery

Ledderhose disease or plantar fibromatosis is a rare condition affecting the bottom of the feet. It is named after Dr. Georg Ledderhose who detailed the disorder in 1894. The disease is also called Morbus Ledderhose. Ledderhose disease is characterized by a buildup of connective tissue in the feet. This connective tissue forms into lumps or nodules on the soles of the feet. The nodules occur in…

[rollatorswalkers]

Medical News Today: Ledderhose disease: Treatments, diet, and surgery https://t.co/bqLiv5GqBo

Medical News Today: Ledderhose disease: Treatments, diet, and surgery http://pic.twitter.com/bqLiv5GqBo

— Rollators & Walkers (@RollatorsWalker) September 9, 2017

http://twitter.com/RollatorsWalker/status/906434037220298752 http://ift.tt/2bL4HeZ

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/we-need-controls/

We Need Controls!

We need controls!

No, not cockpit controls or videogame controls, and no, we’re not out of control. We need control participants for the Dupuytren Biomarker Discovery Pilot Study.

Our goal is to make progress toward a Dupuytren cure as quickly as possible. We’re pushing forward with the Dupuytren Biomarker Discovery Pilot Study. Because of COVID-19, there’s a hold right now on blood sample collection. Delays will be temporary for some participants, but others may no longer be able to participate. As a result, we need to enroll more participants. Our greatest need right now is enrolling more control participants. We need your help.

Who can enroll as a control? We need men and women who roughly match Dupuytren enrollees but who don’t have Dupuytren/Ledderhose/Frozen shoulder/Peyronie and don’t have blood relatives with Dupuytren. Most Dupuytren enrollees are:

40 or older

Not overweight

Caucasian

Without serious health conditions or Rheumatoid arthritis

You can help by encouraging people who match this profile to enroll in the International Dupuytren Data bank: https://DupStudy.com. Friends, in-laws, neighbors, co-workers, and others who want to do a good deed even in COVID-19 isolation.

Why? Simple: we need control participants to complete the biomarker research study.

Is it safe? It’s as safe as medical survey research can be. We’re following all currently recommended measures to protect the privacy of all IDDB enrollees, including these and other steps:

All participant data is de-identified to protect participant identity and prevent biasing the research. For example, Protected Health Information, contact information, image files, specimen collection information, and study laboratory findings are each kept in separate documents for each participant. Each document has a different random ID number. Only limited research staff can access the key linking different documents for any one participant.

The research protocol is approved and monitored by an independent licensed Investigational Review Board to ensure compliance with US and international laws protecting the rights and privacy of research participants.

Enrollment forms run on secure SSL certified web servers. Participant data is stored on local servers, which are not accessible online.

Enrollee data will not be sold or shared with commercial organizations. Any requests for access to individual data require additional consent from the research participant.

We need the combined expertise of the global Dupuytren research community to analyze biomarker data. Data for analysis will be made available only in de-identified form and only to vetted academic researchers and only if they agree that it will not be otherwise shared.

We are using all available safeguards to protect the privacy of research participants. Participant data contains no financial or contact group information. The risk of a data breach is extremely low, but not zero. Each person can freely decide whether the benefit to the global Dupuytren community outweighs risk of access to their raw laboratory data.

So, what is the next step? Help recruit control participants to enroll in the IDDB. The more of us working together, the faster we can complete this critical research!

I’m very grateful for your help.

Be good and stay well!

Thanks.

Charles Eaton MD

Executive Director, Dupuytren Research Group

[stefanoligorio]

(via Medicina – Il morbo di Ledderhose.)