Mito Registry

Capturing the power in numbers

Join The Mito Registry

What is the Mito Registry?

The Mito Registry collects important information about Australians with confirmed or suspected mitochondrial disease (mito) for the purpose of research into treatments and cures.

The primary aim of the Mito Registry is to establish a significant base of patient data to attract clinical trials to Australia, ensuring our mito community benefits from the latest developments in mito medicines and treatment.

Why should I join the Mito Registry?

Joining the Mito Registry will ensure you have the earliest access to new treatments by having the opportunity to take part in a relevant study or clinical trial.

And, the benefit goes even broader than improving your own health outcomes. Being part of the Mito Registry means that you can contribute to ground-breaking medical advancements which lead to a brighter future for the entire mito community.

You do not need to have a confirmed diagnosis to join the Mito Registry. If you or any family members are suspected of having mito and are going through a diagnostic journey, there is great value in being on the Mito Registry.

What is a clinical trial?

Clinical trials are research studies that evaluate a new medical intervention or treatment. They are an essential part of developing new treatments to discover better ways to prevent, detect or treat diseases like mito. Ultimately, these discoveries lead to better health outcomes.

Is my data safe?

Information on the Mito Registry is treated as confidential and will not be disclosed to any third party. We use the Mito Registry to identify people that meet the selection criteria for an upcoming study or clinical trial, and then contact them directly to ask if they would like to be involved. We will then put interested people in touch with the clinician undertaking the study.

Why now?

Research into mito is at an exciting stage, with many promising advancements on the horizon. There are an increasing number of clinical trials emerging and Mito Foundation is working hard to establish the Australian mito community as a worthwhile market. Australians with mito deserve the earliest possible access to these innovative trials, but we need a significant base of patient data to attract them.

Currently there are no cures for mito and few effective treatments. Clinical trials are an essential part of driving the medical advancements the mito community so desperately needs and deserves.

Enter your details below

- Your Information
- Name*
  First Last
- Email*
- Phone*
- Address*
  State Post Code Country
- Patient's Information
- Relationship to Patient*
- Patient's Name*
  First Last
- Patient's Sex
  - Male
  - Female
  - Unspecified
- Patient's Date of Birth*
  DD slash MM slash YYYY
- Patient's Date of Death
  DD slash MM slash YYYY
- Patient's Diagnosis Information
- Do you have a Clinical Diagnosis?*
- Do you have a Biochemical Diagnosis?*
- Do you have a Genetic Diagnosis?*
- Type of Mitchondrial Disease*
  - Alper's Sydnrome
  - Aminoglycoside-induced Deafness (at m.1555)
  - ANS: Ataxia Neuropathy Syndrome
  - Barth Syndrome: X-linked Cardiomyopathy, Mitochondrial Myopathy, Cyclic Neurtopaenia
  - Beta-oxidation Defect
  - Carnitine Deficiency
  - Carnitine-Acylcarnitine Deficiency
  - Co-Enzyme Q10 Deficiency
  - Complex I Deficiency
  - Complex II Deficiency
  - Complex III Deficiency
  - Complex IV Deficiency / COX Deficiency
  - Complex V Deficiency
  - CPEO: Progressive External Ophthalmoplegia
  - CPEO Plus: CPEO plus Proximal Myopathy, Cardiomyopathy, etc
  - CPT I Deficiency
  - CPT II Deficiency
  - Creatine Deficiency Syndromes
  - GRACILE: Growth Retardation, Amino aciduria, Cholestasis, Iron overload, Lactic acidosis, Early death
  - KSS: Kearns-Sayre Syndrome
  - Lactic Acidosis
  - LBSL - Leukodystrohpy
  - LCAD: Long-Chain Acyl-CoA Dehydrogenase Deficiency
  - Leigh Syndrome
  - LHON: Leber's Hereditary Optic Neuropathy
  - LIC: Lethal Infantile Cardiomyopathy
  - Luft Disease
  - MAD: Multiple Acyl-CoA Dehydrogenase Deficiency / Glutaric Aciduria Type II
  - MCAD: Medium-Chain Acyl-CoA Dehydrongenase Deficiency
  - MEGDEL: 3-methylglutaconic aciduria, deafness, encephalopathy and Leigh-like disease
  - MELAS: Mitochondrial Encephalopathy with Lactic Acidosis and Stroke-like episodes
  - MERRF: Myoclonic Epilepsy with Ragged-Red Fibres
  - MIDD: Maternally Inherited Diabetes and Deafness
  - Miller Syndrome
  - Mitochondrial Cardiomyopathy
  - Mitochondrial Cytopathy
  - Mitochondrial Deafness
  - Mitochondrial DNA Depletion
  - Mitochondrial Encephalopathy
  - Mitochondrial Hepatopathy
  - Mitochondrial Myopathy
  - Mitochondrial Neuropathy
  - Mitochondrial Sensory Ataxia, Neuropathy, Epilepsy
  - MNGIE: Mitochondrial Neuro-Gastrointestinal Encephalopathy
  - NARP: Neuropathy, Ataxia and Retinitis Pigmentosa
  - Pearson's Syndrome
  - POLG Mutation/Disease
  - Pyruvate Carboxylase Deficiency
  - Pyruvate Dehydrogenase Deficiency
  - SANDO: Sensory Ataxic Neuropathy with Dysarthria/Dysphagia and Ophthalmoplegia
  - SCAD: Short-Chain Acyl-CoA Dehydrogenase Deficiency
  - VLCAD: Very Long-Chain Acyl-CoA Dehydrogenase Deficiency
  - Other
- Other type of mitochondrial disease
- Patient Notes
- Patient DOB Text

About Us

Mito Foundation supports people affected by mitochondrial disease (mito), funds essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders, and increases awareness and education about this devastating disease.

SUBSCRIBE FOR UPDATES

First Name*
Last Name*
Email*
Mobile*
Do you have a connection to mito?*
- I have mito
- My child has/had mito
- My partner has/had mito
- My parent has/had mito
- My sibling has/had mito
- My grandchild has/had mito
- My grandparent has/had mito
- My other family has/had mito
- My friend has/had mito
- I am a medical professional
- I am a researcher
- I have no connection to mito
- I have an other connection to mito
Other Connection to Mito
Comments
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The Mito Foundation would like to acknowledge the traditional custodians of the land on which we work. We pay respect to their cultures and to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.