Sponsor

This clinical study is sponsored by Neuren Pharmaceuticals, a biopharmaceutical company headquartered in Melbourne, Australia focusing on the development of therapies for neurodevelopmental and neurodegenerative disorders. Current trials target neurodevelopmental disorders such as Angelman, Phelan-McDermid and Pitt Hopkins syndromes. For more information on these upcoming studies, please visit ClinicalTrials.gov. For more information on Neuren Pharmaceuticals, visit Neurenpharma.com. Further information provided by other websites and organisations for additional resources about Angelman syndrome can be found below.

FAST (Foundation for Angelman Syndrome Therapeutics)

FAST has a mission to assist individuals living with Angelman syndrome to realise their full potential and quality of life and bring practical treatment into current medical practices.

More information can be found here via the CureAngelman.org.au website or click on the Read More link below.

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ClinicalTrials.gov

ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world, according to their website. The service is supported by the National Institutes of Health.

You can find our entry at: ClinicalTrials.gov or click on the Read More link below.

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Angelman Syndrome Association Australia (ASAA)

Angelman Syndrome Association Australia provides support to AS families and provides assistance and information on AS to medical and allied health professionals, elected representatives, and the media.

More information can be found at AngelmanSyndrome.org or click on the Read More link below.

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Reimbursement Information

ASAA will administer funds to support families for their participation in this Angelman syndrome study.

If you are interested in receiving travel support towards participation in the study, or would like further information, please contact ASAA directly via email.

ASAA will reimburse funds upon collection of all receipts/invoices at the completion of your participation in the study.*

An upfront payment of partial funds can be provided, if requested.

*All receipts are required to be submitted to ASAA within 45 days of your last study visit.

Reasonable cost guidelines

  • Reimbursement is eligible after expenses are approved and can begin from Visit 3.
  • Reimbursable expenses are for the study participant and one caregiver.
  • One hotel room per night, max. 2 nights per visit.
  • Upgraded travel or accommodations are not eligible for reimbursement.

In order to ensure that we’re able to support future families in this trial, it may not be possible to approve 100% of your estimated expenses, but we will do our best to meet your needs. Thank you for your understanding and dedication to advancing research for Angelman Syndrome.