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Health Outcomes in Pregnancy and Epilepsy (HOPE)

HOPE

The Health Outcomes in Epilepsy and Pregnancy (HOPE) forum was sponsored by the Epilepsy Therapy Project (ETP). Joyce Cramer, ETDP President, organized the forum to answer questions about the types of data collected by and released from the various registries underway globally. Dr. Kimford Meador (Chair), and Drs. Cynthia Harden and Page Pennell (Co-Chairs) led the nine HOPE work-groups with experts from nine countries.

Cramer

The working groups

The work group chairs (listed below) had several conference calls to discuss the overall scope of the project. Following that, each work group convened via teleconference and email to discuss their topic, to share the latest information available, and to consider areas needing further research. All participants submitted written contributions, which were synthesized into reports from each work group.

The group leaders met for a 2-day consensus meeting in January 2007 to consider all of the available information, and to determine directions for disseminating this information to the neurology community. A consensus white paper from the HOPE forum will be published in Neurology. Summary papers from the work groups were published together in Epilepsy and Behavior in November 2007

HOPE articles

HOPE Manuscripts

Meador KJ, Pennell PB, Harden CL, Gordon JC, Tomson T, Kaplan PW, Holmes GL, French JA, Hauser WA, Wells PG, Cramer JA, for the HOPE Work Group. Pregnancy Registries in Epilepsy: A Consensus Statement on Health Outcomes. Neurology 2008; 71:1109-1117.
Page B. Pennell, Barry E. Gidal, Anne Sabers, Jacki Gordon, Emilio Perucca and for the International AED Pharmacology Work Group for the Health Outcomes in Pregnancy and Epilepsy Forum. Pharmacology of antiepileptic drugs during pregnancy and lactation. Epilepsy & Behavior. 2007; 11:263-269.
Holmes GL. Harden C. Liporace J. Gordon J. Postnatal concerns in children born to women with epilepsy. Epilepsy & Behavior. 2007; 11:270-276.
Tomson T. Battino D. French J. Harden C. Holmes L. Morrow J. Robert-Gnansia E. Scheuerle A. Vajda F. Wide K. Gordon J. for the Epilepsy Therapy Development Project (ETDP) Work Group on Teratogenicity-Anatomical. Antiepileptic drug exposure and major congenital malformations: The role of pregnancy registries. Epilepsy & Behavior. 2007; 11:277-282.
Kaplan PW. Norwitz ER. Ben-Menachem E. Pennell PB. Druzin M. Robinson JN. Gordon JC. Obstetric risks for women with epilepsy during pregnancy. Epilepsy & Behavior. 2007; 11:283-291.
Meador KJ. Baker G. Cohen MJ. Gaily E. Westerveld M. Cognitive/behavioral teratogenetic effects of antiepileptic drugs. Epilepsy & Behavior. 2007; 11:292-302.
French JA, Meador KJ, Cnaan T, Gilliam F, Conway J, Araojo R. Ethical concerns with pregnancy registries. Epilepsy & Behavior 2008;12:587-591
Cramer JA, Meador KJ, Harden CL, Pennell PB, and Gordon J, for the ETDP HOPE Consensus Group. Health Outcomes in Pregnancy and Epilepsy (HOPE): Consensus on Needs. Epilepsia 2007 (abstract).

Structure

HOPE Chairman: Kimford Meador MD
HOPE Co-Chairs: Cynthia Harden MD and Page Pennell MD

HOPE Work Groups

Work Group Chair

Epidemiology

W. Allen Hauser MD
Columbia University College of Physicians and Surgeons New York, NY

Ethics, Scientific Integrity, Regulatory Control

Jacqueline French MD
New York University Epilepsy Center
New York, NY

Teratogenicity - Anatomic

Torbjorn Tomson MD
Department of Clinical Neuroscience
Karolinska Institutet
Stockholm, Sweden

Teratogenicity – Cognitive/Behavior

Kimford Meador MD
Department of Neurology
University of Florida
Gainesville, FL

Fertility and Reproductive Endocrinology

Cynthia Harden MD
Department of Neurology
Weill Cornell Medical College
New York, NY

Management and Risks During Pregnancy

Peter Kaplan MB, FRCP
Johns Hopkins University School of Medicine
Baltimore, MD

AED Pharmacology

Page Pennell MD
Emory Epilepsy Program
Emory University School of Medicine
Atlanta, GA

Neonatal/Pediatric Issues

Gregory Holmes MD
Neuroscience Center at Dartmouth
Dartmouth Medical School
Lebanon, New Hampshire

Genetics and Translational Research

Peter Wells MD
University of Toronto
Toronto, Ontario, Canada

Work Groups – Participants

  • Epidemiology:
    Alan Hauser – chair (USA), Ann Berg (USA), Dale Hesdorffer (USA), Page Pennell (USA), David Thurman (CDC - USA)
  • Ethics, Scientific Integrity, Regulatory Control:
    Jacqueline French – chair (USA), Richardae Araojo (FDA -USA), Karen Feibus (FDA – USA), Jill Conway (USA), Tuli Cnaan (USA), Frank Gilliam (USA), Kimford Meador (USA)
  • Teratogenicity - Anatomical:
    Torbjorn Tomson – chair (Sweden), Dina Battino (Italy), Jacqueline French (USA), Cynthia Harden (USA), Lewis Holmes (USA), James Morrow (Northern Ireland), Elizabeth Robert-Gnasa (France), Angela Scheuerle (USA), Frank Vajda (Australia), Katarina Wide (Sweden)
  • Teratogenicity – Cognitive/Behavior:
    Kim Meador – chair (USA)), Gus Baker (UK), Morris Cohen (USA), Eija Gaily (Finland), Michael Westerveld (USA)
  • AED Pharmacology:
    Page Pennell – chair (USA), Barry Gidal (USA), Emilio Perucca (Italy), Anne Sabers (USA)
  • Genetics and Translational Research
    Peter Wells – chair (Canada), Karen Gale (USA), Denis Grant (Canada), Richard Finnell (USA), Kimford Meador (USA), John Olney (USA), Angela Scheuerle (USA)
  • Fertility and Reproductive Endocrinology:
    Cynthia Harden – chair (USA), Neil McClusky (USA), Alison Pack (USA), David Portman (USA)
  • Management and Risks During Pregnancy
    Peter Kaplan (chair), Elinor Ben Menachen (Sweden), Maurice Druzin (USA), Errol Norwitz (USA), Page Pennell (USA), Julian Robinson (USA)
  • Neonatal / Pediatric Issues
    Gregory Holmes – chair (USA), Cynthia Harden (USA), Joyce Liporace (USA)

Submitted: 10/03/07

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