Motor Neurone Disease Trial, Recruiting (NCT00317616)

Motor Neurone Disease Trial, Recruiting NCT00317616 Sponsor: University of Miami Condition: Motor Neurone Disease

Printed from Voxsanity (voxsanity.com.au) — NCT00317616 — Data sourced from ClinicalTrials.gov. Verify directly with the trial site before attending. Not medical advice.

Back to Motor Neurone Disease

Who may be able to join

AI generated eligibility summary. Written by an AI model from the official source data and checked on a sample basis. It can contain mistakes, so confirm anything important against the original source. How we use AI

Who might be able to join this trial:

You have a family member who has been found to carry a gene linked to ALS (also known as Lou Gehrig's disease).
You currently have no symptoms that suggest you have ALS — you must be in good health at the time of joining.
Based on your family history, there is at least a 50% chance that you may have inherited the ALS-related gene mutation.
You are willing to have genetic testing done, with the choice of whether or not you want to be told your results.
You are able and willing to travel to Miami for a few days roughly every 12 to 24 months to take part in study tests, such as MRI scans, blood draws, spinal fluid collection (lumbar puncture), and memory/thinking tests.

Who may not be able to join:

You have already been diagnosed with ALS.
You have a health condition — physical, neurological (brain or nerve-related), or psychological (mental health-related) — that the study doctor believes could affect the study results or make it difficult for you to take part fully (confirm with trial site).

⚠️ Important: Always verify eligibility with the trial site directly before applying.

Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.

This is a simplified plain English summary of the eligibility criteria. Full criteria are set by the trial investigators and may include additional requirements not shown here. Never self-exclude from a trial based on this summary. Contact the trial site directly to confirm your eligibility.

Last synced 28 July 2026

This study is not part of the standard drug-approval phase pathway (for example an observational, device, behavioural, or registry study), so a phase success rate does not apply.

Contact this trial

Principal Investigator: Michael G Benatar, MD, PhD., University of Miami

Phone: 1-888-413-9315

Contact details sourced from ClinicalTrials.gov. Verify directly with the trial site before attending.

GP referral letter

Print a one-page summary to share with your doctor.

Voxsanity

Clinical trials and treatments, explained plainly · voxsanity.com.au

Date:

To: My Doctor

Re: Clinical trial enquiry

I am writing to enquire about the following clinical trial which may be relevant to my care:

Trial: NCT00317616

Sponsor: University of Miami

Phase: Not Applicable

Status: Recruiting

Condition: Motor Neurone Disease

Trial contact: 1-888-413-9315

More information: https://clinicaltrials.gov/study/NCT00317616

Eligibility summary (AI generated)

Written by an AI model from ClinicalTrials.gov eligibility criteria and checked on a sample basis. Please confirm against the original criteria.

Who might be able to join this trial:

You have a family member who has been found to carry a gene linked to ALS (also known as Lou Gehrig's disease).
You currently have no symptoms that suggest you have ALS — you must be in good health at the time of joining.
Based on your family history, there is at least a 50% chance that you may have inherited the ALS-related gene mutation.
You are willing to have genetic testing done, with the choice of whether or not you want to be told your results.
You are able and willing to travel to Miami for a few days roughly every 12 to 24 months to take part in study tests, such as MRI scans, blood draws, spinal fluid collection (lumbar puncture), and memory/thinking tests.

Who may not be able to join:

You have already been diagnosed with ALS.
You have a health condition — physical, neurological (brain or nerve-related), or psychological (mental health-related) — that the study doctor believes could affect the study results or make it difficult for you to take part fully (confirm with trial site).

⚠️ Important: Always verify eligibility with the trial site directly before applying.

Access in Australia: A treatment being studied in a clinical trial is generally not yet listed on the PBS. Where a medicine is not approved or not available through a trial, the TGA Special Access Scheme may allow a doctor to access unapproved therapeutic goods for individual patients. See voxsanity.com.au/sas-navigator/ for a plain English explainer.

This information was sourced from ClinicalTrials.gov via Voxsanity (data last synced 28 July 2026). It is not medical advice. Please verify the trial's current status directly with the trial site before acting.

Trial details

Status

Recruiting

Phase

Not Applicable

Sponsor

University of Miami

Registry

ClinicalTrials.gov

Start date

1 April 2006

Est. completion

1 December 2037

Where this trial is recruiting

🇺🇸 United States

Primary endpoints

Risk Factors for Progression to familial ALS

Can't join this trial?

Expanded access pathways

If this trial is not available to you, other access pathways may exist. In Australia, the TGA Special Access Scheme allows access to unapproved therapeutic goods for individual patients.

TGA Special Access Scheme information

Find other recruiting trials on ClinicalTrials.gov

Data last synced from ClinicalTrials.gov: 28 July 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.

Trial recruitment status can change without notice between our nightly data updates. Always contact the trial site directly to confirm current recruitment status before making any decisions or travel arrangements.

View original record on ClinicalTrials.gov