Current KCNB1 Research
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Would you like your child or family member with KCNB1 related epilepsy to participate in research studies? There are currently three ongoing research studies specifically targeted to KCNB1.
If you are interested in participating in research to help find treatment and a cure for KCNB1, please contact us and we can provide you with more information. These projects help get us closer to understanding this complex potassium channel disorder and closer to improving treatment and finding a cure. Participation is completely voluntary for anyone who has been diagnosed with a KCNB1 gene mutation. |
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Want to Help Fund KCNB1 Research?
There are more than 6,000 diseases that affect fewer than 200,000 people annually in the United States. Research in these rare diseases is difficult because, for most, the scientific mechanisms underlying the pathology are not understood. Presenting an even larger barrier is funding this research. Northwestern Hospital, where two important KCNB1 studies are taking place, now has a fund set up where you can donate online or by check via mail. All donations are tax deductible and are 100% allocated to KCNB1 research.
Make your tax-deductible donation to KCNB1 research by clicking on the link below. For gift designation, select "other" and specify "Dr Kearney KCNB1 Research" in the other designation box.
Or, send a check by mail to:
June Ulrey
Northwestern University Feinberg School of Medicine
Development & Alumni Relations
420 E Superior
Arthur J. Rubloff Building, 9th Floor
Chicago IL 60611
(Please specify Dr Kearney KCNB1 Research in the memo line.)
June Ulrey
Northwestern University Feinberg School of Medicine
Development & Alumni Relations
420 E Superior
Arthur J. Rubloff Building, 9th Floor
Chicago IL 60611
(Please specify Dr Kearney KCNB1 Research in the memo line.)
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What is the study about?
This study will collect clinical information such as the types of seizures, other symptoms, and treatments from patients with epilepsy due to ion channel mutations. The specific features of the patients will be compared closely with information about how the mutations affect the channels when studied with specialized techniques in the lab. We hope to learn more about epilepsy channelopathies, their natural history, and develop the most effective treatment strategies.
Who is eligible?
Anyone older than 1 month old diagnosed with epilepsy that is caused by an identified ion channel gene mutation (including, but not limited to, SCN1A, SCN1B, SCN2A, SCN8A, KCNQ2, KCNQ3, KCNT1, and KCNB1).
What is involved?
If you decide to participate in this study, you will be asked to fill out online and paper surveys (about seizures, treatments and other medical history) and send medical records of your child from his/her doctor or hospital. The researchers will collect the clinical data and remove any personal identifying information from the database to maintain confidentiality. The ion channel gene mutation testing results will be used for specialized tests in the lab to learn more about each specific mutation does in the brain cell.
Who do I contact?
Remember, this is completely voluntary. You can choose to be in the study or not. If you'd like to participate or have any questions about the study, please contact the Principal Investigator:
John J. Millichap, MD, FAAP
Attending Epileptologist, Ann & Robert H. Lurie Children’s Hospital of Chicago
Assistant Professor of Pediatrics and Neurology, Northwestern University Feinberg School of Medicine
T 312.227.3540 | F 312.227.9644 | jmillichap@luriechildrens.org
225 East Chicago Avenue, Box 29, Chicago, Illinois 60611-2605
http://www.luriechildrensresearch.org/
This study is Lurie Children’s IRB# 2015-348, Epilepsy Channelopathies Study; PI: John J. Millichap, MD. The content of this flyer has been approved by the Lurie Children’s IRB.
This study will collect clinical information such as the types of seizures, other symptoms, and treatments from patients with epilepsy due to ion channel mutations. The specific features of the patients will be compared closely with information about how the mutations affect the channels when studied with specialized techniques in the lab. We hope to learn more about epilepsy channelopathies, their natural history, and develop the most effective treatment strategies.
Who is eligible?
Anyone older than 1 month old diagnosed with epilepsy that is caused by an identified ion channel gene mutation (including, but not limited to, SCN1A, SCN1B, SCN2A, SCN8A, KCNQ2, KCNQ3, KCNT1, and KCNB1).
What is involved?
If you decide to participate in this study, you will be asked to fill out online and paper surveys (about seizures, treatments and other medical history) and send medical records of your child from his/her doctor or hospital. The researchers will collect the clinical data and remove any personal identifying information from the database to maintain confidentiality. The ion channel gene mutation testing results will be used for specialized tests in the lab to learn more about each specific mutation does in the brain cell.
Who do I contact?
Remember, this is completely voluntary. You can choose to be in the study or not. If you'd like to participate or have any questions about the study, please contact the Principal Investigator:
John J. Millichap, MD, FAAP
Attending Epileptologist, Ann & Robert H. Lurie Children’s Hospital of Chicago
Assistant Professor of Pediatrics and Neurology, Northwestern University Feinberg School of Medicine
T 312.227.3540 | F 312.227.9644 | jmillichap@luriechildrens.org
225 East Chicago Avenue, Box 29, Chicago, Illinois 60611-2605
http://www.luriechildrensresearch.org/
This study is Lurie Children’s IRB# 2015-348, Epilepsy Channelopathies Study; PI: John J. Millichap, MD. The content of this flyer has been approved by the Lurie Children’s IRB.
