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username password forgot login? home resources glossary register register now contact us who we are ongoing studies clinic partners bio bank & tissue repository skip to content frontpage slideshow | copyright © 2006-2011 joomlaworks ltd. register now! registered affected individuals are required for: clinical trials pharmaceutical investment government intervention and funding awareness and advocacy by registering you will also receive: cmdir newsletters 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 ) was created in 2009 to identify the global congenital muscle disease population for the purpose of raising awareness, standards of care, assisting with enrollment in clinical trials, and in the future finding treatments or cures. to date, we have over 2,600 registrants from 80 countries. we will not be successful in finding a treatment or cure unless we know who the affected individuals are, what the diagnosis is and how the disease is affecting the individual. you do not have to be diagnosed with a specific muscle disorder to register. we welcome everyone with congenital or later onset muscle weakness to register, and can provide information on institutions who perform genetic testing, the names of medical providers who specialize in the diagnosis and treatment of muscle disease, and community support groups to put you in touch with others affected by a muscle disorder. disorders we register the following subtypes are followed in our registry, and include the full spectrum from early (congenital) through late onset. click here to view the list of genes associated with these disorders. congenital and limb girdle muscular dystrophy alpha 7/alpha 9 integrin related myopathy collagen vi related myopathy (ullrich through bethlem cmd ) alpha -dystroglycan related muscular dystrophy (dystroglycanopathy, wws , meb , fukuyama, fkrp, lgmd2i, lgmd2k, lgmd2m, lgmd2n, lgmd2o) choline kinase b receptor emery-dreifuss muscular dystrophy (edmd, lgmd1b, lmna, emerin, fhl1, syne1, syne2, tmem43) lama2 related muscular dystrophy (laminin alpha 2 related dystrophy/ mdc1a / merosin def icient) lmna related muscular dystrophy (laminopathy/lamina/c, l-cmd, emery dreifuss muscular dystrophy) ryr1 related myopathy (with dystrophic presentation, including malignant hyperthermia, exertional myalgia with or without rhabdomyolysis) sepn 1 related myopathy (rigid spine muscular dystrophy/rsmd1, congenital fiber type disproportion, mallory weiss body desmin, multi-minicore myopathy) syne1 (nesprin related muscular dystrophy) telethonin related muscular dystrophy (tcap/titin-cap) congenital muscular dystrophy not otherwise specified (including merosin positive) titin related lgmd/cmd, lgmd2j congenital myopathy actin aggregation myopathy cap disease central core disease (including malignant hyperthermia, exertional myalgia with or without rhabdomyolysis) centronuclear myopathy (including malignant hyperthermia, exertional myalgia with or without rhabdomyolysis) congenital fiber type disproportion (including malignant hyperthermia, exertional myalgia with or without rhabdomyolysis) core rod myopathy hyaline body myopathy multiminicore myopathy myotubular myopathy nemaline myopathy reducing body myopathy ryr1 related myopathy (including malignant hyperthermia, exertional myalgia with or without rhabdomyolysis) spheroid body myopathy titin related myopathy, titin related dialated cardiomyopathy, lgmd2j tubular aggregate myopathy zebra body disease myopathy congenital m yopathy not otherwise specified congenital myasthenic syndrome escobar syndrome myofibrillar myopathy related disorders heart disorders resulting from mutations in lmna or emerin heart disorders resulting from mutations in ttn malignant hyperthermia resulting from mutations in ryr1 additional registries and advocacy groups for subtypes followed in the cmdir cure cmd a foundation building strength for nemaline myopathy the joshua frase foundation for centronuclear and myotubular myopathies the international family registry for centronuclear and myotubular myopathies the myotubular and centronuclear myopathy patient registry (myotubular trust) global fkrp registry (lgmd-2i) lgmd-2i fund ryr-1 foundation malignant hyperthermia association of the united states disorders not followed in the cmdir the following subtypes are not followed in our registry, however, if available, we have provided a weblink to the registry that serves each disorder. if your website is not listed, please let us know at this e-mail address is being protected from spambots. you need javascript enabled to view it . charcot marie tooth - cmtausa.org duchenne/becker muscular dystrophy - duchenneconnect.org facioscapulohumeral dystrophy/fshd - urmc.rochester.edu/neurology/national-registry inclusion body myopathy - ibm.yale.edu/ kennedy’s disease - kennedysdisease.org lgmd-1a (ttid) lgmd-1c (cav3, caveloin 3, caveolinopathy, lqt9, vip21) lgmd-1d (7q) lgmd-1e (6q23) lgmd-1f (7q32.1-q32.2) lgmd-1g (4q21) lgmd-2a (capn3/calpainopathy) - curecalpain3.org , www.lgmd2a.org lgmd-2b (dysf/dysferlinopathy/miyoshi myopathy) - jain-foundation.org , dysferlinregistry.org lgmd-2c (sgcg) - kurtpeterfoundation.org/patient_registry lgmd-2d (sgca) - lgmd2d.org lgmd-2e (sgcb) - beta-sarcoglicanopathy.org lgmd-2f (sgcd) lgmd-2l (an05/anoctamin 5) - jain-foundation.org lipodystrophy - www.lipodystrophyunited.org myotonic dystrophy - myotonic.org , myotonicregistry.org , urmc.rochester.edu/neurology/national-registry oculopharyngeal muscular dystrophy - som.unm.edu/programs/opmd spinal muscular atrophy - smaregistry.iu.edu select english español português (brasil) 繁體中文 (chinese) english español português (brasil) 繁體中文 (chinese) ongoing studies a trial of pf-06252616 in ambulatory participants with lgmd2i phase pilot trial ii-iii with n-acetylcysteine in sepn1- related myopathy (selnac) cms amifampridine phosphate study cardiac arrhythmias and sudden death in patients affected with laminopathies mtm manifesting carrier study inceptus: a non-interventional clinical assessment study in x-linked myotubular myopathy (xlmtm) a medical chart review of patients with x-linked myotubular myopathy (xlmtm) congenital myasthenic syndrome: expanded access study of amifampridine phosphate antioxidant therapy in ryr1-related congenital myopathy (n-acetylcysteine) callisto omigapil study (collagen vi & lama2) congenital muscle disease hypoglycemia survey (cmd hypoglycemia) mtm1 carrier survey prospective, longitudinal study of the natural history and functional status of patients with myotubular myopathy (mtm) use of tyrosine in nemaline myopathy a study to test hyperinsufflation to slow the rate of decline in children with collagen vi or lama2 -cmd development of a proxy motor outcome assessment in young children with neuromuscular disease clinical trial readiness for the dystroglycanopathies mtm genetic testing study prospective event rate study in males with x-linked myotubular myopathy clinical trials and studies overview top privacy policy & terms and conditions copyright © 2018 patientcrossroads - all rights reserved

URL analysis for cmdir.org

https://www.cmdir.org/index.php?option=com_content&view=category&id=3&itemid=504&lang=en
https://www.cmdir.org/index.php?option=com_content&view=article&id=451%3amtm1-carrier-survey&catid=3%3aannouncements&itemid=504&lang=en
https://www.cmdir.org/index.php?option=com_content&view=article&id=448%3ahyperinsufflation-children-with-collagen&catid=3%3aannouncements&itemid=504&lang=en
https://www.cmdir.org/#ja-content
https://www.cmdir.org/index.php?option=com_content&view=article&id=449%3ause-of-tyrosine-in-nemaline-myopathy&catid=3%3aannouncements&itemid=504&lang=en
https://www.cmdir.org/index.php?option=com_content&view=article&id=452%3acmd-hypoglycemia&catid=3%3aannouncements&itemid=504&lang=en
https://www.cmdir.org/index.php?option=com_comprofiler&task=registers&itemid=490&lang=en
https://www.cmdir.org/index.php?option=com_content&view=article&id=459%3acms-study&catid=3%3aannouncements&itemid=504&lang=en
https://www.cmdir.org/index.php?option=com_content&view=article&id=437&itemid=505&lang=en
https://www.cmdir.org/index.php?option=com_comprofiler&task=registers&pid=1
https://www.cmdir.org/index.php?option=com_content&view=article&id=126&itemid=223&lang=en
https://www.cmdir.org/index.php?option=com_content&view=article&id=458&itemid=496
https://www.cmdir.org/index.php?option=com_content&view=article&id=442%3aprospective-adverse-event-rate-study-in-males-with-x-linked-myotubular-myopathy&catid=3%3aannouncements&itemid=504&lang=en
https://www.cmdir.org/index.php?option=com_content&view=article&id=444%3amtm-genetic-testing-study&catid=3%3aannouncements&itemid=504&lang=en
https://www.cmdir.org/index.php?option=com_content&view=article&id=450%3avalerion-mtm&catid=3%3aannouncements&itemid=504&lang=en

Whois Information

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Domain Name: CMDIR.ORG
Registry Domain ID: D156751471-LROR
Registrar WHOIS Server: whois.domain.com
Registrar URL: www.domain.com
Updated Date: 2018-03-04T21:40:19Z
Creation Date: 2009-07-28T18:46:46Z
Registry Expiry Date: 2019-07-28T18:46:46Z
Registrar Registration Expiration Date:
Registrar: Domain.com, LLC
Registrar IANA ID: 886
Registrar Abuse Contact Email: [email protected]
Registrar Abuse Contact Phone: +1.6022262389
Reseller:
Domain Status: ok https://icann.org/epp#ok
Registrant Organization: Cure CMD
Registrant State/Province: CA
Registrant Country: US
Name Server: NS2.LUNARIFFIC.COM
Name Server: NS1.LUNARIFFIC.COM
DNSSEC: unsigned
URL of the ICANN Whois Inaccuracy Complaint Form https://www.icann.org/wicf/)
>>> Last update of WHOIS database: 2018-07-30T01:08:19Z <<<

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Access to Public Interest Registry WHOIS information is provided to assist persons in determining the contents of a domain name registration record in the Public Interest Registry registry database. The data in this record is provided by Public Interest Registry for informational purposes only, and Public Interest Registry does not guarantee its accuracy. This service is intended only for query-based access. You agree that you will use this data only for lawful purposes and that, under no circumstances will you use this data to (a) allow, enable, or otherwise support the transmission by e-mail, telephone, or facsimile of mass unsolicited, commercial advertising or solicitations to entities other than the data recipient's own existing customers; or (b) enable high volume, automated, electronic processes that send queries or data to the systems of Registry Operator, a Registrar, or Afilias except as reasonably necessary to register domain names or modify existing registrations. All rights reserved. Public Interest Registry reserves the right to modify these terms at any time. By submitting this query, you agree to abide by this policy.

Please query the RDDS service of the Registrar of Record identified in this output for information on how to contact the Registrant, Admin, or Tech contact of the queried domain name.

  REFERRER http://www.pir.org/

  REGISTRAR Public Interest Registry

SERVERS

  SERVER org.whois-servers.net

  ARGS cmdir.org

  PORT 43

  TYPE domain

DOMAIN

  NAME cmdir.org

  HANDLE D156751471-LROR

  CREATED 2009-07-28

STATUS
ok https://icann.org/epp#ok

NSERVER

  NS2.LUNARIFFIC.COM 64.50.160.3

  NS1.LUNARIFFIC.COM 216.227.216.43

OWNER

  ORGANIZATION Cure CMD

ADDRESS

  STATE CA

  COUNTRY US

  REGISTERED yes

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