FSHD Medical Research & Clinical Trial Readiness Program

As global medical research advances, so too does our knowledge and understanding of FSHD. While this Portal helps to educate and share resources with our community, it also encourages people living with FSHD to join of the FSHD Medical Research & Clinical Trial Readiness Program.

The availability of a large, well-defined FSHD population clinically, genetically and epigenetically, is paramount to facilitate the timely and efficient running of world standard clinical trials in Australia. We invite you to be part of this critical program to ensure that clinical trials and future treatments that may become available are accessible to those living with FSHD in Australia.

To be eligible to participate in the FSHD Medical Research & Clinical Trial Readiness Program, you must complete the following three steps;

Join the FSHD Global Registry

(Note your personal information will be securely and privately stored on our HIPPA compliant database)

Order a FSHD Saliva Research Test to your home

(By clicking here, you will be connected directly with the Peter Jones Lab (University of Nevada, Reno School of Medicine, USA) to facilitate your private test and receive your results).

Donate your Saliva Research Test results to join the FSHD Medical Research & Clinical Trial Readiness Program

You can request to remove your results at any time.
Results may be anonymously shared to support and advance medical research.
When biotech’s require participants, and/or a clinical trial is recruiting you will be contacted.
Note: Your results will be stored in a highly secure HIPAA compliant cloud database, and will be deemed as confidential information.

FSHD Medical Research & Clinical Trial Readiness Program

To be eligible to participate in the FSHD Medical Research & Clinical Trial Readiness Program, you must complete the following three steps;

STEP 1

STEP 2

STEP 3

Apply for a Saliva Research Test to be sent to your home today

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