dysferlinregistry.org

The International Dysferlinopathy Registry

The International Dysferlinopathy Registry. Thank you for your interest in the International Dysferlinopathy Registry. The registry has been moved to a new platform. Welcome to the International Dysferlinopathy Registry. The International Dysferlinopathy Registry provides an opportunity for patients with LGMD2B, Miyoshi Myopathy and other clinical presentations of dysferlinopathies to participate in research studies or clinical trials and obtain the best possible care. And Japanese ( 日本語. To view your de...

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The International Dysferlinopathy Registry | dysferlinregistry.org Reviews

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The International Dysferlinopathy Registry. Thank you for your interest in the International Dysferlinopathy Registry. The registry has been moved to a new platform. Welcome to the International Dysferlinopathy Registry. The International Dysferlinopathy Registry provides an opportunity for patients with LGMD2B, Miyoshi Myopathy and other clinical presentations of dysferlinopathies to participate in research studies or clinical trials and obtain the best possible care. And Japanese ( 日本語. To view your de...

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The International Dysferlinopathy Registry | dysferlinregistry.org Reviews

https://dysferlinregistry.org

The International Dysferlinopathy Registry. Thank you for your interest in the International Dysferlinopathy Registry. The registry has been moved to a new platform. Welcome to the International Dysferlinopathy Registry. The International Dysferlinopathy Registry provides an opportunity for patients with LGMD2B, Miyoshi Myopathy and other clinical presentations of dysferlinopathies to participate in research studies or clinical trials and obtain the best possible care. And Japanese ( 日本語. To view your de...

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dysferlinregistry.org

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The International Dysferlinopathy Registry

http://www.dysferlinregistry.org//DYSFL2/EN

The International Dysferlinopathy Registry. The Clinical Outcome Study for Dysferlinopathy. Dysferlinopathies are characterized by progressive muscle wasting and are clinically divided into four main types:. Limb-Girdle Muscular Dystrophy type 2B (LGMD2B),. Distal Myopathy with Anterior Tibial onset (DMAT),.

2

The International Dysferlinopathy Registry

http://www.dysferlinregistry.org//DYSFL4_1/EN

The International Dysferlinopathy Registry. Learn more about the registration process. Am I eligible to register with the International Dysferlinopathy Registry? This patient registry is specifically developed for patients with confirmed genetic mutations in the gene called dysferlin, including the most frequent clinical presentations called limb girdle muscular dystrophy type 2B (LGMD2B) and Miyoshi myopathy. For the clinical diagnosis of dysferlinopathies and a list of laboratories performing genetic t...

3

The International Dysferlinopathy Registry

http://www.dysferlinregistry.org//DYSFL3_5/EN

The International Dysferlinopathy Registry. Why is this patient registry for dysferlinopathies important? Data protection and your rights. Please choose the subject of your request from the following categories:. I have lost my login information. I need to retrieve my registration code. I wish to update my data. I wish to withdraw my data from the Registry. I would like to receive paper copies of the Registry forms. Where should I send paper copies of my Registration Questionnaires? 27, bd Jean Moulin.

4

The International Dysferlinopathy Registry

http://www.dysferlinregistry.org//DYSFL4/EN

The International Dysferlinopathy Registry. Learn more about the registration process. Participating in the International Dysferlinopathy Registry will provide the following benefits for you:. The more patient information collected, the better equipped researchers will be for finding therapies for this disease. You will receive information relevant to you or your condition for example you will be notified if researchers find better ways of caring for patients with a dysferlinopathy.

5

The International Dysferlinopathy Registry

http://www.dysferlinregistry.org//DYSFL3/EN

The International Dysferlinopathy Registry. Why is this patient registry for dysferlinopathies important? Data protection and your rights. Why is this patient registry for dysferlinopathies important? In addition, the International Dysferlinopathy Registry. Will provide key details and information needed by physicians and researchers, including the specific genetic defects found in each patient. The Registry helps researchers answer questions such as How common are dysferlinopathies?

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cmdir.org

PatientCrossroads CMD

https://www.cmdir.org/index.php

Bio Bank and Tissue Repository. Registered affected individuals are required for:. Government intervention and funding. By registering you will also receive:. Notice of available clinical trials that apply to your registered profile. Notice of available therapies that apply to your registered profile when they become available. The Congenital Muscle Disease International Registry ( CMDIR. We will not be successful in finding a treatment or cure unless we know. Who the affected individuals are,. The follo...

mda.org.au

Muscular Dystrophy - "The Home of MDA"

http://www.mda.org.au/Disorders/Dystrophies/LGMD.asp

What Is Limb Girdle Muscular Dystrophy? The muscular dystrophies are a group of muscle diseases which have three features in common: they are hereditary; they are progressive; and each causes a characteristic, selective pattern of muscle weakness. Bull; What are the different types of LGMD? Bull; What are the symptoms of LGMD? Bull; What causes LGMD and how is it inherited? Bull; How is LGMD diagnosed? Bull; Why is genetic counseling important? Bull; What can be done to manage the symptoms? 5 to 20 years.

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dysferlinregistry.org

The International Dysferlinopathy Registry

The International Dysferlinopathy Registry. Thank you for your interest in the International Dysferlinopathy Registry. The registry has been moved to a new platform. Welcome to the International Dysferlinopathy Registry. The International Dysferlinopathy Registry provides an opportunity for patients with LGMD2B, Miyoshi Myopathy and other clinical presentations of dysferlinopathies to participate in research studies or clinical trials and obtain the best possible care. And Japanese ( 日本語. To view your de...

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