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The AED Pregnancy Registry
- The Massachusetts General Hospital

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Sponsored by: AbbVie, Eisai, Novartis, Ortho-McNeil, Pfizer, Sunovion, UCB
LINKS

NATIONAL/INTERNATIONAL ORGANIZATIONS and ADVOCACY:

Epilepsy Foundation: www.epilepsyfoundation.org
The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the 2.7 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by affiliated Epilepsy Foundation offices in nearly 100 communities.


American Epilepsy Society
: www.aesnet.org
The American Epilepsy Society promotes research and education for professionals dedicated to the prevention, treatment and cure of Epilepsy.


Mother to Baby
: www.mothertobaby.org
MotherToBaby, a service of the non-profit Organization of Teratology Information Specialists, is dedicated to providing evidence-based information to mothers, health care professionals, and the general public about medications and other exposures during pregnancy and while breastfeeding. MotherToBaby affiliates support and contribute to worldwide initiatives for teratology education and research.

Citizens United for Research in Epilepsy (CURE): www.CUREepilepsy.org
Citizens United for Research in Epilepsy, is a volunteer-based nonprofit organization founded by parents of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications. Unwilling to sit back and accept the debilitating effects of epilepsy, these parents joined forces to spearhead the search for a cure.
 

Epilepsy.Com: www.epilepsy.com
Epilepsy.com exists to inform and empower patients and families living with epilepsy. We offer a roadmap to understanding the epilepsies, how they touch people's lives, and the options for treatment. To assist in following that roadmap, we also offer a forum for community and the sharing of insights by patients and caregivers. We seek to enable more productive relationships with caregivers, more effective care, and better lives for those with epilepsy.

Epilepsy Canada
: www.epilepsy.ca
Epilepsy Canada is the only Canadian non-profit organization whose mission is to promote and support research into all aspects of epilepsy, and to create awareness and understanding about epilepsy through educational programs.

National Council on Patient Information and Education: www.talkaboutrx.org
NCPIE's mission is to stimulate and improve communication of information on the appropriate use of medicines to consumers and health care professionals. NCPIE develops programs, provides educational resources, and offers services to advance the common mission of its members.


My Epilepsy Story:
www.myepilepsystory.org
My Epilepsy Story is a forum to unite with ONE voice, women and children who are affected by this devastating neurological disorder. We share the stories of women and children living with epilepsy and the ones that have died from epilepsy……all in an effort to find better treatment, a cure, and to increase awareness for women and children’s health in epilepsy.

By raising awareness, improving education, and increasing funding for research, we can improve the lives of ALL women and children who suffer from the devastating neurological disorder called epilepsy. My Epilepsy Story will educate, advocate, and fund cutting-edge research for women and children living with epilepsy. We will propose a bill, to provide federal funding for a national pregnancy registry. To accomplish these goals, My Epilepsy Story will attain 501(c)3 status and will partner with other organizations and corporations to fulfill our vision. In addition, My Epilepsy Story will join with the International League Against Epilepsy, to help address the needs of women and children living with epilepsy across the globe.


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HEALTH INFORMATION and RESEARCH STUDIES:

MONEAD (Maternal Outcomes and Neurodevelopmental Effects of Antiepileptic Drugs) : www.moneadstudy.org
Most Women with epilepsy have normal pregnancies, but appear to be at risk for problems during pregnancy (e.g., seizures, change in medications, depression, c-sections) and adverse outcomes in their children (e.g., thinking or behavioral problems). The purpose of this observational study is to establish the risk and determine the factors or contributions to those risks.

Motherisk: www.motherisk.org
Your source for evidence-based information about the safety or risk of drugs, chemicals and disease during pregnancy and lactation

National Pregnancy Registry for Atypical Antipsychotics:
www.womensmentalhealth.org/pregnancyregistry
The National Pregnancy Registry for Atypical Antipsychotics is dedicated to evaluating the safety of atypical antipsychotic medications that may be taken by women during pregnancy to treat a wide range of mood, anxiety, or psychiatric disorders. The goal of this Registry is to gather information on the safety of these medications during pregnancy, as current data is inconclusive.
CALL TOLL-FREE: 1-866-961-2388

MGH Center for Women’s Mental Health: www.womensmentalhealth.org
MGH Center for Women’s Mental Health was designed in an effort to provide scientifically sound and clinically useful information to caregivers and patients at a time when the field of women's mental health is quickly evolving.

Seizures.net: www.seizures.net
Seizures.net publishes recent developments in the treatment of epilepsy. The web site provides information to the public and health care professionals.

Eurap International Registry: www.eurapinternational.org/
Eurap International Registry was aunched in Europe in 1999 by a consortium of independent research groups and later extended to several other nations worldwide. The aim was to collect data on the risk of antiepileptic drugs during pregnancy and share it in an international registry. At present, physicians from 40 countries in Europe, Australia, Asia and South America are actively collaborating, and more than 17,700 pregnancies have been registered.

UK Epilepsy & Pregnancy Register: http://www.epilepsyandpregnancy.co.uk/
The UK Epilepsy and Pregnancy register was established in 1996 for pregnant women
in the UK.
The major objective is to obtain and publish information on the frequency of major malformations, such as heart defect, spina bifida and cleft lip, among infants whose mothers take one or more antiepileptic drugs (AEDs) to prevent seizures.

Australian Pregnancy Register: www.victorianepilepsycentre.org.au
A voluntary Australia wide registry of patients who become pregnant while taking an anti epileptic drug has been established. The primary aim of the register is to determine the incidence of adverse foetal outcomes resulting from pregnancies in Australian women who were taking anti epileptic drugs (AEDs).

NIH Clinical Trials Site: www.ninds.nih.gov/health_and_medical/studies.htm
Links to disorder-specific clinical trials.

MEDLINEplus Health Information: www.nlm.nih.gov/medlineplus/epilepsy.html
MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations. Preformulated MEDLINE searches are included in MedlinePlus and give easy access to medical journal articles. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news.

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