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Useful Links

Disease information about Alpha Mannosidosis

 

For more information about Alpha Mannosidosis, you can visit the Discover Alpha Mannosidosis website.
NORD is the National Organization for Rare Disorders and also has useful information.

Patient organizations

There’s a supportive community out there that’s eager to provide information sources, understanding and advice. A host of organizations and support groups is just a few clicks away.

  • ISMRD is the international advocate for glycoprotein storage diseases, such as Alpha Mannosidosis.
  • National MPS Society is a US-based organization for patients with mucopolysaccharidosis diseases.
  • Canadian MPS Society for Mucopolysaccharide & Related Diseases is a Canada-based organization.

Information about clinical trials

More information about the SHAMAN clinical trial can be found at clinicaltrials.gov. The clinical study is identified by the study code: NCT04031066. For information about clinical trials in general, please review the general information about clinical trials at ClinicalTrials.gov and information provided by the National Institutes of Health. The U.S. Food & Drug Administration (FDA) site, and the Canadian Institute for Health Information (CIHI) site also have information.

References
  1. ClinicalTrials.gov. Interventional Study to Assess Efficacy and Safety of Velmanase Alfa in Patients With Alpha Mannosidosis (SHAMAN). Available at: https://clinicaltrials.gov/ct2/show/NCT04031066. Last accessed: January 21, 2020.
  2. ClinicalTrials.gov. Learn About Clinical Studies. Available at: https://clinicaltrials.gov/ct2/about-studies/learn. Last accessed: January 21, 2020.
  3. National Institutes of Health. NIH Clinical Research Trials and You. Available at: https://www.nih.gov/health-information/nih-clinical-research-trials-you/basics. Last accessed: January 21, 2020.
  4. Borgwardt L, Stensland HM, Olsen KJ, et al. Alpha-mannosidosis: correlation between phenotype, genotype and mutant MAN2B1 subcellular localisation. Orphanet J Rare Dis. 2015;10:70.
  5. European Medicines Agency. New enzyme replacement therapy to treat rare genetic disorder alpha-mannosidosis in children and adults. Available at: https://www.ema.europa.eu/en/news/new-enzyme-replacement-therapy-treat-rare-genetic-disorder-alpha-mannosidosis-children-adults. Last accessed: January 21, 2020.
  6. Chiesi. Clinical Trial Transparency and Data Sharing. Available at: https://www.chiesi.com/en/research-and-development/clinical-trial-transparency-and-data-sharing/. Last accessed: January 21, 2020.
  7. Malm D, Nilssen Ø. Alpha-mannosidosis. Orphanet J Rare Dis. 2008;3:21.
  8. Bavisetty S, Grody WW, Yazdani S. Emergence of pediatric rare diseases: Review of present policies and opportunities for improvement. Rare Dis. 2013;1:e23579.