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Patient safety and comfort are our highest priority, alongside that of our colleagues.
The study sponsor and investigators have been monitoring the situation with  COVID-19  and are understandably concerned about the impact it could have on the safety of our patients participating in the trial.

We are working hard to minimize the impact of the situation regarding  COVID-19  on the trial, and keep all involved safe. However, we encourage patients and interested parties to contact the appropriate center to receive the most up-to-date news on the study.

A new study to test a potential treatment for Alpha Mannosidosis.

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.