Wednesday, November 9, 2016

(LML) Erythematous itchy rash after 3rd dose of MDT MB

Leprosy Mailing List – November 9, 2016

Ref.: (LML) Erythematous itchy rash after 3rd dose of MDT MB

From: Francesca Gajete, Manilla, Philippines


 Dear Pieter,

 

May I know from Dr Ben Naafs (LML, October 31, 2016) if we continue Clofazimine, what dose to give in such case since we are discontinuing Dapsone and Rifamficin?

 

Thank you,

 

Dr Francesca Gajete,Philippines 

ILA, VP for ASia

 

 


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


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(LML) Busting #LeprosyMyths on Twitter

Leprosy Mailing List – November 9, 2016

Ref.: (LML) Busting #LeprosyMyths on Twitter

From: Eric L Wan, Baltimore, USA


 

Dear Dr. Schreuder and LML,

I am a young researcher (25 years old) who currently works with Hansen's patients in Ecuador. In 2013 when I first went to work with the people of Ecuador, I lived with them at the hospital. When I returned to the USA, people would inevitably ask, "Is it safe to shake your hand?" or "Is it safe to hug you?" A lot of them would ask, "Does Leprosy exist?"

I cannot imagine that I am alone in this. Others, such as readers of LML, must also feel this way. There is a lot of ignorance today in the world. (For example, one only needs to look at the ongoing American presidential elections.) To combat this we must promote ourselves and educate others about the good work. Too many people compare this and that to leprosy as if leprosy were still to be feared.

I would like to invite the LML readership to join on Twitter and other social media, and use the #LeprosyMyths and #LeprosyFacts to bust or debunk some myths that you have encountered or heard about. You could even ask questions and an expert may respond! I sincerely hope that the big organizations (Lepra, TLM, ALM, etc.) will want to join as well. If this is popular, I sincerely hope that the community can join together on a regular basis to use #LeprosyMyths and #LeprosyFacts.

Here's my invitation:
https://twitter.com/ericlwan/status/795786320501207040

I hope to see you all on Twitter,

Eric Wan

--

Eric Lee Wan, BS

Consultant (Community Health & Research)
Fundación Padre Damian
Guayaquil, Ecuador
+593 4-228-6649

Research Affiliate
Department of Plastic and Reconstructive Surgery,
Johns Hopkins University School of Medicine
Baltimore, Maryland, USA

Google Voice:
+1 (678) 744-9361
USA Cell: 
+1 (240) 899-1181
Ecuador Cell: 
+593 (96) 804-5383
Colombia Cell: +57
(313) 780-6653
Skype: ericleewan
https://www.linkedin.com/in/ericleewan

 


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


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Tuesday, November 8, 2016

(LML) Protocol for a Randomized Controlled Trial Investigating Decompression for Leprous Neuropathy (The DELN Protocol)

Leprosy Mailing List – November 8,  2016

Ref.: (LML)    Protocol for a Randomized Controlled Trial Investigating Decompression for Leprous Neuropathy (The DELN Protocol)

From:  Eric L Wan, Baltimore, USA


 

Dear Dr. Schreuder,

 

 

The recent publication in Leprosy Review entitled "Protocol for a Randomized Controlled Trial Investigating Decompression for Leprous Neuropathy (The DELN Protocol)" is the result of significant effort on the part of Hansen's community members in 6 nations so far. The purpose of this email is to open discussion regarding our publication in Leprosy Review.

 

During the First Planning Meeting held in Denver, Colorado, USA in November 2015, surgeons, scientists, and clinicians exchanged knowledge about leprous neuropathy. Given the limitations of prior trials, as highlighted by Van Veen1, it was agreed upon that a new randomized controlled trial (RCT) was necessary to evaluate the efficacy of surgical nerve decompression for leprous neuropathy. In our recent publication in Leprosy Review, we outlined major aspects of the RCT called the Decompression for Leprous Neuropathy (DELN) RCT. A full protocol of the DELN RCT is being drafted among the initial group of attendees at the First Planning Meeting and with consultation from the Institute for Clinical and Translational Research at the Johns Hopkins Bloomberg School of Public Health. We will be happy to include experts in the Hansen's community in this process.

 

Following the drafting of the DELN RCT protocol, we will be working with institutional review boards (IRBs) at multiple participating institutions and with potential funding sources, including the Leprosy Research Initiative, to further revise the protocol. Subsequently, the protocol will be submitted for funding and opened to the broader Hansen's community for comments. Currently, coordination will be provided by Eric Wan, BS, at the Johns Hopkins School of Medicine Department of Plastic and Reconstructive Surgery in Baltimore, Maryland, USA.

 

The first submission for IRB review will occur at the Johns Hopkins Medical Institutes (JHMI) in Baltimore. IRB approval at the JHMI will be dependent on a protocol agreed upon by the IRBs of all participating institutions. Therefore, following IRB submission at the JHMI, all participating institutions will be required to submit the DELN RCT protocol for IRB review. Throughout this process, participating parties including potential funding sources will be consulted as appropriate.

 

We are actively looking for comments on the published article. Additionally, if your institution would like to participate in this endeavor, or if you are a funding organization interested in this endeavor, please email the LML or Eric Wan at ewan1[at]jhmi[dot]com. We look forward to the ensuing discussion about our endeavor.

 

With warm regards,

[All the authors]

 

CC:

Leprosy Research Initiative

Gedge D. Rosson, MD

Carisa M. Cooney, MPH

James Wilton, DPM

William B. Ericson, MD

 

References
1.         Van Veen NH, Schreuders TA, Theuvenet WJ, Agrawal A, Richardus JH. Decompressive surgery for treating nerve damage in leprosy. Cochrane Database Syst Rev 2012;12:CD006983.

 

 


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 


Virusvrij. www.avast.com

(LML) International Hansen's Disease Journal Club

 

Leprosy Mailing List – November 8,  2016

Ref.:   (LML)  International Hansen's Disease Journal Club

From:  Eric L Wan, Baltimore, USA


 

Dear LML Readers,

 

After consulting with the LML and Infolep administrations, I would like to initiate the "International Hansen's Disease Journal Club." Information sharing is important to the Hansen's community; it is a way we learn and connect with those fighting for the same cause. This journal club is a way of using LML to further our understanding of the current efforts in Hansen's disease research.

 

With each month's Infolep publication, I will send a reminder about this effort. Interested readers can choose one or more research articles to read, analyze, and discuss as the primary discussant. Individuals are not limited to the Infolep list. The individual will read any article of his/her choice and respond to a set of questions. The responses will serve as the initial discussion and will be shared through the LML. This month’s list of articles is reproduced below.

 

After consulting with LML and Infolep, Clinical Research Core of the Plastic and Reconstructive Surgery Department at Johns Hopkins School of Medicine, we have come up with a list of standard questions for each month's "International Hansen's Disease Journal Club."

 

1.    From your view, what is the summary of this paper?

 

2.    What is the question this paper tried to address? Alternatively, what was the intention of this paper?

 

3.    What methods were used to address that question?

 

4.    Going method by method, what were the results? Alternatively, what did the authors find?

 

 

5.    How successful was this paper in addressing its original question or intention?

 

6.    How could the paper be improved? For example, what limitations does this paper have?

 

7.    What economic, policy, social, etc., impact does this paper have on your work and on the broader community?

 

Of course, discussants will be free to write any additional comments and thoughts, but they should strive to respond to the above questions at minimum.

 

Please send your responses to LML at editorlml@gmail.com to provide your discussion of the article you chose. It would be helpful if your subject line included "Hansen's Disease Journal Club" followed by a portion of the article title.

 

If you do not have access to any articles, please reach out to infolep@leprastichting.nl to obtain the full article. I hope that this effort will enable the LML community to better understand and engage with current and new research being undertaken in our field.

 

 

With warm regards for all,

 

Eric Wan

 

Consultant (Community Service & Research)

Fundación Padre Damian

Guayaquil, Ecuador

+593 4-228-6649

 

Research Affiliate

Department of Plastic and Reconstructive Surgery,

Johns Hopkins University School of Medicine

Baltimore, Maryland, USA

 

Google Voice: +1 (678) 744-9361

USA Cell: +1 (240) 899-1181

Ecuador Cell: +593 098-877-5430

Colombia Cell: +57 (313) 780-6653

Skype: ericleewan

https://www.linkedin.com/in/ericleewan

 

InfoLep November 2016 list reproduced below. Source: http://us13.campaign-archive1.com/?u=c4144e6e4197694fb8e01d02f&id=5a68ed2df1&e=a3ad02f856

Global leprosy strategy 2016-2020: Accelerating towards a leprosy-free world - Operational Manual. WHO. 2016.
Download PDF

International textbook of leprosy. 
Scollard DM, Gillis TP. American Leprosy Missions. 2016.

Now online


Risk factors, early detection and treatment of neuropathy in leprosy. 
Thesis by Inge Wagenaar. Erasmus University Rotterdam. 2016.
Download PDF

 

Impact of a Reference Center on Leprosy Control under a Decentralized Public Health Care Policy in Brazil.
Barbieri RR, Sales AM, Hacker MA, et al. PLoS Negl Trop Dis. 2016 Oct 12;10(10):e0005059.
Download


Leprosy Drug Resistance Surveillance in Colombia: The Experience of a Sentinel Country.
Beltrán-Alzate C, López Díaz F, Romero-Montoya M, et al. PLoS Negl Trop Dis. 2016 Oct 5;10(10):e0005041.
Download


Leprosy and Lack of Awareness in U.S.
Clinicians. Bianchi T, Sevigny G. Journal of the Dermatology Nurses' Association, 2016 (5).
Download


Leprosy in the UK.
Bharucha T, Lockwood D. Br J Hosp Med (Lond). 2016 Oct;77(Sup10):C154-C156.
Abstract


Molecular Pathogenesis of Leprosy. 
Bokhary, M. & Phung, T.L. Curr Trop Med Rep (2016).
Download


Leprosy simulating systemic sclerosis: a case report.
Chu BB, Gobbo GF, Copês R, et al. Rev Bras Reumatol. 2016 Sep 17. pii: S0482-5004(16)30073-0.
Download


Do leprosy and tuberculosis generate a systemic inflammatory shift? Setting the ground for a new dialogue between experimental immunology and bioarchaeology.
Crespo FA, Klaes CK, Switala AE, et al. Am J Phys Anthropol. 2016 Oct 5.
Abstract


Diffusion Tensor Imaging Tractography in Pure Neuritic Leprosy: First Experience Report and Review of the Literature.
Colonna MR, Tallarida G, d'Alcontres FS, et al. Case Rep Neurol Med. 2016
Download


Role of TEFFECTOR/MEMORY Cells, TBX21 Gene Expression and T-Cell Homing Receptor on Type 1 Reaction in Borderline Lepromatous Leprosy Patients.
Dos Santos LN, da Silva PH, Alvim IM, et al. PLoS One. 2016 Oct 20;11(10):e0164543.
Download


Opportunities for Integrated Control of Neglected Tropical Diseases That Affect the Skin. 
Engelman D, Fuller LC, Solomon AW, e a.Trends Parasitol. 2016 Nov;32(11):843-854.
Download


Cell-type deconvolution with immune pathways identifies gene networks of host defense and immunopathology in leprosy. Inkeles MS, Teles RM, Pouldar D, et al. JCI Insight. 2016 Sep 22;1(15):e88843.
Download


Addition of immunotherapy to chemotherapy in pediatric borderline leprosy: a clinical evaluation. 
Kamal R, M. N, R. D. Int J Contemp Pediatr. 2016; 3(4): 1439-1444.
Download


Leprosy with ulnar nerve abscess: ultrasound findings in a child. Lugão HB, Frade MA, Mazzer N, e a. Skeletal Radiol. 2016 Oct 27
Abstract


Integrated Healthcare Delivery: A Qualitative Research Approach to Identifying and Harmonizing Perspectives of Integrated Neglected Tropical Disease Programs. 
Means AR, Jacobson J, Mosher AW, e a. PLoS Negl Trop Dis. 2016 Oct 24;10(10):e0005085.
Download


The involvement of endothelial mediators in leprosy.
Nogueira MR, Latini AC, Nogueira ME. Mem Inst Oswaldo Cruz. 2016 Oct 3:0.
Download


Clinico-epidemiological study of Hansen’s disease patients attending a tertiary care centre in South India. 
Patil AA, Sherkhane MS. Int J Community Med Public Health. (2016), 3(11): 3092-3095.
Download


Leprosy and women. Sarkar R, Pradhan S. International Journal of Women'sDermatology. 2016.
Download


The Burden of Leprosy in Cameroon: Fifteen Years into the Post-elimination Era. 
Patil AA, Sherkhane MS, e a. PLoS Negl Trop Dis. 2016 Oct 12;10(10):e0005012.
Download


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


Virusvrij. www.avast.com

Monday, November 7, 2016

Ref.: (LML) Infolep new publications on leprosy November 2016


Leprosy Mailing List – November 7,  2016

Ref.: (LML) Infolep new publications on leprosy November 2016

From:  Jiske Erlings, Amsterdam, the Netherlands


Dear Pieter,

 

Greetings from INFOLEP.

Below you will find a selection of recent publications on leprosy. Feel free to contact me (infolep@leprastichting.nl)  to receive the full text versions if a link to the full text is not included.


And keep sending us your publications on leprosy or material on leprosy in your language to include in the portal.

With kind regards,
 
Jiske Erlings
INFOLEP Information specialist
 

 

 

Highlighted publications

 

 

Global leprosy strategy 2016-2020: Accelerating towards a leprosy-free world - Operational Manual. WHO. 2016.
Download PDF

International textbook of leprosy.
Scollard DM, Gillis TP. American Leprosy Missions. 2016.

Now online


Risk factors, early detection and treatment of neuropathy in leprosy.
Thesis by Inge Wagenaar. Erasmus University Rotterdam. 2016.
Download PDF

Tune in to @RadioHealthJrnl for a an educational segment about
#leprosy /Hansen's Disease with David Scollard.
https://radiohealthjournal.wordpress.com/…/16-40-segment-2…/

@IJCYFSreview Announcement: Call for Papers: Special Issue on
#QualityofLife and Family Quality of Life. https://journals.uvic.ca/index.php/ijcyfs/announcement

 

 

New publications

 

 

Impact of a Reference Center on Leprosy Control under a Decentralized Public Health Care Policy in Brazil.
Barbieri RR, Sales AM, Hacker MA, et al. PLoS Negl Trop Dis. 2016 Oct 12;10(10):e0005059.
Download


Leprosy Drug Resistance Surveillance in Colombia: The Experience of a Sentinel Country.
Beltrán-Alzate C, López Díaz F, Romero-Montoya M, et al. PLoS Negl Trop Dis. 2016 Oct 5;10(10):e0005041.
Download


Leprosy and Lack of Awareness in U.S.
Clinicians. Bianchi T, Sevigny G. Journal of the Dermatology Nurses' Association, 2016 (5).
Download


Leprosy in the UK.
Bharucha T, Lockwood D. Br J Hosp Med (Lond).
2016 Oct;77(Sup10):C154-C156.
Abstract


Molecular Pathogenesis of Leprosy.
Bokhary, M. & Phung, T.L. Curr Trop Med Rep (2016).
Download


Leprosy simulating systemic sclerosis: a case report.
Chu BB, Gobbo GF, Copês R, et al. Rev Bras Reumatol.
2016 Sep 17. pii: S0482-5004(16)30073-0.
Download


Do leprosy and tuberculosis generate a systemic inflammatory shift? Setting the ground for a new dialogue between experimental immunology and bioarchaeology.
Crespo FA, Klaes CK, Switala AE, et al. Am J Phys Anthropol.
2016 Oct 5.
Abstract


Diffusion Tensor Imaging Tractography in Pure Neuritic Leprosy: First Experience Report and Review of the Literature.
Colonna MR, Tallarida G, d'Alcontres FS, et al. Case Rep Neurol Med. 2016
Download


Role of TEFFECTOR/MEMORY Cells, TBX21 Gene Expression and T-Cell Homing Receptor on Type 1 Reaction in Borderline Lepromatous Leprosy Patients.
Dos Santos LN, da Silva PH, Alvim IM, et al. PLoS One. 2016 Oct 20;11(10):e0164543.
Download


Opportunities for Integrated Control of Neglected Tropical Diseases That Affect the Skin.
Engelman D, Fuller LC, Solomon AW, e a.Trends Parasitol.
2016 Nov;32(11):843-854.
Download


Cell-type deconvolution with immune pathways identifies gene networks of host defense and immunopathology in leprosy. Inkeles MS, Teles RM, Pouldar D, et al. JCI Insight. 2016 Sep 22;1(15):e88843.
Download


Addition of immunotherapy to chemotherapy in pediatric borderline leprosy: a clinical evaluation.
Kamal R, M. N, R. D. Int J Contemp Pediatr.
2016; 3(4): 1439-1444.
Download


Leprosy with ulnar nerve abscess: ultrasound findings in a child. Lugão HB, Frade MA, Mazzer N, e a. Skeletal Radiol. 2016 Oct 27
Abstract


Integrated Healthcare Delivery: A Qualitative Research Approach to Identifying and Harmonizing Perspectives of Integrated Neglected Tropical Disease Programs.
Means AR, Jacobson J, Mosher AW, e a. PLoS Negl Trop Dis. 2016 Oct 24;10(10):e0005085.
Download


The involvement of endothelial mediators in leprosy.
Nogueira MR, Latini AC, Nogueira ME.
Mem Inst Oswaldo Cruz. 2016 Oct 3:0.
Download


Clinico-epidemiological study of Hansen’s disease patients attending a tertiary care centre in South India.
Patil AA, Sherkhane MS. Int J Community Med Public Health.
(2016), 3(11): 3092-3095.
Download


Leprosy and women. Sarkar R, Pradhan S. International Journal of Women'sDermatology. 2016.
Download


The Burden of Leprosy in Cameroon: Fifteen Years into the Post-elimination Era.
Patil AA, Sherkhane MS, e a. PLoS Negl Trop Dis. 2016 Oct 12;10(10):e0005012.
Download


 

 

Journals & Newsletters

 

 

Community Eye Health Journal: http://www.cehjournal.org/

Disability, CBR & Inclusive Development:
http://dcidj.org/

Hansenologia Internationalis:
http://www.ilsl.br/revista/atual.php

Indian Journal of Leprosy:
http://www.ijl.org.in/index.html 

Leprosy Review:
https://www.lepra.org.uk/Pages/FAQs/Category/volume-87
Leprosy Review Repository (1928-2001) :
http://leprev.ilsl.br/arquivo.php

Plos Neglected Tropical Diseases:
http://journals.plos.org/plosntds/
 
Revista de Leprología:
http://www.leprosy-information.org/resource/revista-de-leprologia
 
WHO Goodwill Ambassador’s Newsletter for the elimination of leprosy:
http://www.leprosy-information.org/resource/who-goodwill-ambassador-s-newsletter-elimination-leprosy
 

 

 

Websites & Services

 

 

in Asia 1975-1990


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 


Virusvrij. www.avast.com

(LML) A day on the ground

Leprosy Mailing List – November 7,  2016

Ref.: (LML) A day on the ground

From:  Joel Almeida, Mumbay and London


 

 

Dear Pieter,

 

 

Thanks to Dr. Warren for her kind words (LML November 1, 2016). I note her concern about WHO advice.

 

The internet age has changed many things.  In the print era, peer review was by one or two referees. Delays were measured in months. Few people bothered to read the journals. 

 

Decisions were made by a handful of self-declared experts behind closed doors. These decisions were imposed on others, for better or worse. 

 

In the internet era, ideas can be put forth instantaneously. Hundreds of peers can examine a claim. They can respond instantaneously, online. Errors can be highlighted, and improvements suggested, immediately. No claims or views are exempt from quick discussion.

 

Nowadays it is much more difficult to persist in error. 

 

All this is good news for the populations of endemic countries. Even a simple email list like LML can serve as a platform for refining knowledge and views. 

 

So Dr. Warren should not be too worried about WHO's limitations. There is a relatively new team at WHO's GLP, and everyone expects the best of them. In any case, whatever is sound will be widely used. Whatever is suspect or counter-productive will be ignored. All of us can suggest improvements.

 

Now every claim or proposal (or fad) can be measured by simple yardsticks, such as: 

 

1. Does this tend to destroy or rebuild effective specialist skills and services?  

2. Does this increase or decrease the protection of nerves in the population at risk? 

3. Does this hasten or delay the detection or protection of people with lepromatous leprosy?

4. Does this improve or worsen the quality of life for people disfigured by leprosy?

 

Leprosy in India has been increasing for at least a decade, as suggested by the doubling in incidence rate of newly detected cases with visible deformities at diagnosis. We need to rebuild expertise, not dilute it. 

 

There is a limit to what inexpert village workers can do. Detecting and treating silent neuritis, or even diagnosing lepromatous leprosy, takes skill. Trained and skilled leprosy workers, equipped with transportation and covering a large population, would transform the prospects for nerve protection and skilled early detection. India had such skilled and mobile workers, until people started boasting about a fictitious victory. This complacency was a gift to M. leprae and a blow to the people of India.

 

Thanks to the internet and LML, we now keep improving our knowledge and practice at a good pace. We are in a new era of leprosy control, and a new era of online scientific discussion. The ivory tower is not taken so seriously now. Clues from the ground are no longer easy to brush aside. The Indian government is rebuilding leprosy services. All of us can contribute to continuous improvement. The prospects for the population at risk are steadily improving. 

 

The more skilled workers we train and fund, the more nerves and people we will protect. Those Indian citizens who took the government to court recognized this and sought adequate staffing of leprosy services. This is the low-hanging fruit, easier to reach than some of our bigger but more distant ambitions. 

 

Regards,

 

Joel Almeida

in Asia 1975-1990


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


Virusvrij. www.avast.com