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Home | Pyridoxine Dependent Epilepsy

The potentials of a novel add-on therapy. Lysine restriction has been shown by our proof of principle study (van Karnebeek, Hartmann et al; Molec Genet Metab 2012;107:335-44). To reduce neurotoxic metabolites and improve, seizure control, behavior and/or psychomotor development. However more evidence is required before diet becomes mainstay therapy. If you have signed up and received login details, you can enter the registry directly via the link below. Better unravel PDE disease mechanisms. Ensure that ...

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The potentials of a novel add-on therapy. Lysine restriction has been shown by our proof of principle study (van Karnebeek, Hartmann et al; Molec Genet Metab 2012;107:335-44). To reduce neurotoxic metabolites and improve, seizure control, behavior and/or psychomotor development. However more evidence is required before diet becomes mainstay therapy. If you have signed up and received login details, you can enter the registry directly via the link below. Better unravel PDE disease mechanisms. Ensure that ...
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1 pyridoxine dependent epilepsy
2 for professionals
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Home | Pyridoxine Dependent Epilepsy | pyridoxinedependantepilepsy.org Reviews

https://pyridoxinedependantepilepsy.org

The potentials of a novel add-on therapy. Lysine restriction has been shown by our proof of principle study (van Karnebeek, Hartmann et al; Molec Genet Metab 2012;107:335-44). To reduce neurotoxic metabolites and improve, seizure control, behavior and/or psychomotor development. However more evidence is required before diet becomes mainstay therapy. If you have signed up and received login details, you can enter the registry directly via the link below. Better unravel PDE disease mechanisms. Ensure that ...

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pyridoxinedependantepilepsy.org pyridoxinedependantepilepsy.org
1

Information on PDE for Professionals

http://www.pyridoxinedependantepilepsy.org/pro.html

Let us know who you are via the form below or enter de-identified patient data in the PDE registry via the buton top right. PDE caused To Antiquitin (ATQ) Deficiency: Altered Lysine Metabolism. Deficiency of lysine degradation can lead to the chemical inactivation of pyridoxine, leading to potentially damaging levels of neurotoxic substances. Dietary Lysine Restriction Co-Therapy. First patient results are promising. But ‘we are not there yet'. At this stage the evidence is still limited. We need to ...

2

Members of the PDE consortium

http://www.pyridoxinedependantepilepsy.org/team.html

We look forward to collaborating with clinicians, scientists and families around the world to improve health outcome of individuals affected by PDE. If you are interested to join us or your name is not on the list while it should be, please email us via the contact form below:. Members of the PDE Consortium:. Orange County, USA. Bruce A Barshop -. San Diego, California, USA. Veldhoven, The Netherlands. Jean Paul Collet -. Aurora, Colorado USA. Michael S Duchowny -. Paul Graham Fisher -. Andrea L Gropman -.

3

Information on PDE for families and patients

http://www.pyridoxinedependantepilepsy.org/pat.html

We are collecting medical data from people to generate more solid evidence and gain greater insight into the development of the disease and effect of treatments. This information will be put into a database (International PDE Registry), which we can then use to better understand this rare disease, improve patient care and achieve the best health outcomes for the individuals with this condition. What kind of medical data will be collected? The following information will be collected throughout time:.

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pdeonline.org pdeonline.org

Members of the PDE consortium

http://www.pdeonline.org/team.html

We look forward to collaborating with clinicians, scientists and families around the world to improve health outcome of individuals affected by PDE. If you are interested to join us or your name is not on the list while it should be, please email us via the contact form below:. Members of the PDE Consortium:. Orange County, USA. Bruce A Barshop -. San Diego, California, USA. Veldhoven, The Netherlands. Jean Paul Collet -. Aurora, Colorado USA. Michael S Duchowny -. Paul Graham Fisher -. Andrea L Gropman -.

pdeonline.org pdeonline.org

Information on PDE for families and patients

http://www.pdeonline.org/pat.html

We are collecting medical data from people to generate more solid evidence and gain greater insight into the development of the disease and effect of treatments. This information will be put into a database (International PDE Registry), which we can then use to better understand this rare disease, improve patient care and achieve the best health outcomes for the individuals with this condition. What kind of medical data will be collected? The following information will be collected throughout time:.

pdeonline.org pdeonline.org

Information on PDE for Professionals

http://www.pdeonline.org/pro.html

Let us know who you are via the form below or enter de-identified patient data in the PDE registry via the buton top right. PDE caused To Antiquitin (ATQ) Deficiency: Altered Lysine Metabolism. Deficiency of lysine degradation can lead to the chemical inactivation of pyridoxine, leading to potentially damaging levels of neurotoxic substances. Dietary Lysine Restriction Co-Therapy. First patient results are promising. But ‘we are not there yet'. At this stage the evidence is still limited. We need to ...

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pyridoxinedependantepilepsy.org pyridoxinedependantepilepsy.org

Home | Pyridoxine Dependent Epilepsy

The potentials of a novel add-on therapy. Lysine restriction has been shown by our proof of principle study (van Karnebeek, Hartmann et al; Molec Genet Metab 2012;107:335-44). To reduce neurotoxic metabolites and improve, seizure control, behavior and/or psychomotor development. However more evidence is required before diet becomes mainstay therapy. If you have signed up and received login details, you can enter the registry directly via the link below. Better unravel PDE disease mechanisms. Ensure that ...

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