PARTICIPATE

What does participating in SALSA involve?

Our research aim

SALSA-SGC aims to build a national resource of data and biological samples that will support MND research projects today and moving into the future.

Underpinned by a systems genomics approach, this national resource will capture “layers” of clinical, biological and genomic data, integrating these to better understand the genetic and non-genetic factors that contribute to MND.  

Learn more about SALSA-SGC

What does being a SALSA participant involve?

Informed consent

We will ask you to provide informed consent before you commence the SALSA study. A participant information and consent form will be provided to you by the research nurses.

Biological samples

During your routine visit to the MND clinic (approximately every three months), you will be asked to donate a sample of blood. DNA will be obtained from the blood sample you provide and used to look for regions on the genome, which could be involved in the cause, progression or even treatment of ALS.

Clinical information

During your routine visit to the MND clinic (approximately every three months), the research team including your consulting neurologist will collect information about your ALS diagnosis, general health history, physical measurements (height, weight and girth) and lifestyle. They will also administer the ALS Functional Rating Scale (ALSFRS) interview, which collects information about your physical abilities such as movement, dressing and eating.

What will happen to my samples and data?

Biological samples are receipted at dedicated SALSA laboratories. Blood samples are centrifuged and separated by laboratory staff into fractions (i.e. red blood cells, plasma, serum, buffy coat).

Sample fractions are stored in secure freezers. All fractions are labelled with unique IDs and are tracked through a laboratory inventory management system. A variety of genomic data can be generated from these samples.

As part of the standard SALSA-SGC protocol, laboratory staff extract DNA from samples and generate in-house genotype data.

Analyses can be carried out using genomic data generated by the SALSA labs. One example of this is genetic screening for mutations in known ALS genes such as SOD1. All data is stored on secure platforms before, during and after analyses.

How do I participate?

To participate, please contact the research team at your nearest SALSA-SGC research clinic. Research clinics and contact details are listed to the right. 

Frequently asked questions

What is genomics?
  • Genomics is the study of the genome.
  • The genome is the DNA held in our chromosomes.
  • Genomics includes study of the DNA sequence code.
  • For any person the DNA sequence code is identical (almost exclusively) for all the cells in the body.
  • Differences in DNA sequence between individuals can reflect, in part, differences between people in their risk of disease.

 

  • The DNA sequence codes for genes. Specific proteins are made when genes are expressed.
  • There are ~20,000 genes coded in the human genome.
  • Genomics also includes the study of which, when, how and why genes are expressed, which differs between cells, over time, in response to environmental contexts and in response to disease.
What is systems genomics?
  • In systems genomics we measure different types of information from the genome from the same individuals to build up a picture of which, when, how and why genes are expressed in different cell types.
  • Systems genomics is a new field, but one we think is going to become increasingly interesting for research.
Will genomics give the answers we need to find the cure for ALS?

We don’t know, but we believe that what we learn from genomics studies of sporadic ALS will help advance our understanding of the causes of ALS.
The consistent collection of biological and clinical samples implemented in clinics across Australia will contribute to many facets of clinical and non-genomics based research.

Have a question?

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