2014 in Review – DES Daughter Network Blog

DES Daughter Network blog blog was viewed about 51,000 times in 2014

A guest post by Hugh Easton got 1,213 views on August 1st…
Read Primodos, the hormone pregnancy test which caused birth befects and devastated lives.

Click here to see the complete report.
See you in 2015 🙂 in 2016 🙂 in 2017 🙂

Distilbène 1 Mg boite bleue par UCB pharma

Archives Institut National de l’Audiovisuel Ina Sciences, 1983

image de distilbene-1mg
Cette boite rouge de comprimés distilbène 5 mg était produite par UCB pharma.

Le Diethylstilbestrol ou DES a été commercialisé via de nombreux noms tels que le Distilbène®, Stilbetin®, Stilboestrol-Borne®, Benzestrol®, Chlorotrianisene®, Estrobene® et Estrosyn® par exemple.

Nombre de sociétés ont promu et vendu leur médicament DES sous plus de 200 noms de marque différents.

Cette boite bleue de 26 dragées de 1 mg était produite par UCB pharma.

Images de médicaments DES
Le Distilbène DES, en savoir plus

The National DES Education Program: effectiveness of the California Health Provider Intervention

Academic detailing may increase physician knowledge and history taking practice

imahe of Health-Services provider
Men and Women who were exposed to DES are at higher risk for developing cancers compared to people who were not exposed to DES.

This 2002 research study explored the effectiveness of academic detailing on physician knowledge and practices related to preventative care for women exposed to synthetic estrogen (DES).

Physician participants were visited by a trained physician and received educational materials, management guidelines, chart reminders, medical history forms, office posters and brochures. They were informed about the reasons of why it was important to take a DES history. A lecture was featured to introduce the goals of this educational program to the participants. Physicians took a pre-intervention and post-intervention test that evaluated the change in their knowledge. To help assess study outcomes, patients likewise engaged in pre-intervention and post intervention surveys. While the study relied on self-reported outcome measures, the results revealed that academic detailing may increase physician knowledge and history taking practice.

Abstract

BACKGROUND
Diethylstilbestrol (DES), a synthetic estrogen prescribed during pregnancy between 1938 and 1971, was later shown to have serious health effects, including higher risks of cancer in daughters and mothers. The authors report results of an intervention to increase health care providers’ awareness of preventive care for women exposed to DES before birth.

METHODS
A controlled trial enrolled 20 to 25 health care providers in each of three communities to test the effectiveness of an academic detailing intervention. Outcomes (knowledge, routine screening) were assessed by provider questionnaires and patient surveys.

RESULTS
DES knowledge, familiarity with national guidelines, and screening for exposure increased significantly in the intervention communities but not in the control communities. The intervention effect for DES screening was significant (p = 0.01). Patient surveys confirmed provider self-report.

CONCLUSION
Academic detailing can increase DES knowledge and history taking among primary care providers. This intervention could be disseminated to increase knowledge of DES preventive care.

Sources and more information
  • The National DES Education Program: Effectiveness of the California Health Provider Intervention, American Board of Medical Specialties, 04/2002.
  • The National DES Education Program: effectiveness of the California Health Provider Intervention, Journal of cancer education: the official journal of the American Association for Cancer Education, NCBI PMID:12000106, 2002 Spring.
  • NATIONAL DES EDUCATIONAL PROGRAM FOR HEALTH PROFESSIONALS AND THE PUBLIC, NIH Guide, Volume 22, Number 15, April 16, 1993.
More DES DiEthylStilbestrol Resources

2015 in Review – DES Daughter Network Blog

Click on the image to see the complete report

To kick off the new year, we’d like to share with you data on DES Daughter Network blog’s activity in 2015.

In 2015, there were 937 new posts, growing the total archive of this blog to 2,900 posts.

Click here to see the complete report.
See you in 2016 🙂 in 2017 🙂

Time to take epigenetic inheritance seriously

European Journal of Human Genetics, 2002

epigenetic-inheritance image
Behaviour can be affected by events in previous generations which have been passed on through a form of genetic memory, animal studies suggest.

Rich pickings from the past

Any study of transgenerational effects needs information from across the generations, and this is not easy to obtain in humans. There is little research on the effect of exposures in grandparents on outcomes in their grandchildren, but one such study obliges us to confront the possibility of epigenetic inheritance down the male line. Herein lies the importance for human geneticists of the work of Kaati, Bygren and Edvinsson from Umea University, Sweden. Building on their interest in early nutritional influences on cardiovascular mortality, they have exploited records of annual harvests from an isolated community in northern Sweden that go back as far as 1799 to explore the effects of food availability across three generations.

Le Cancer chez Nos Enfants! Signez la pétition “Eva Pour La Vie”

Cancer de l’enfant: demande d’étude d’un projet de loi

poster pétition eva-pour-la-vie
Des vies pourraient être prolongées voire préservées avec un traitement individualisé.

Demande d’étude d’un projet de loi traitant des thèmes suivants:

Avec 500 décès par an, le cancer est la première cause de mortalité des enfants par maladie. Pourtant, moins de 2% des fonds dédiés à la recherche anti-cancer sont alloués aux cancers pédiatriques.

    • La création d’un fond dédié à la recherche indépendante sur les cancers, leucémies et maladies rares de l’enfant, qui serait notamment financé par le biais d’une taxe (mineure) prélevée sur le chiffre d’affaire des industriels du médicament. Une disposition, légale ou réglementaire, soutenant les sociétés du médicament à but non lucratif qui commercialiseraient (à un prix réglementé) en première intention des médicaments contre les cancers et maladies rares des enfants, serait également mise en place.

Des vies pourraient être prolongées voire préservées avec un traitement individualisé et non une voie palliative.

  • La possibilité d’individualiser les traitements dans le cas de maladies dites rares où il n’existe pas de vraie “thérapie” curative. Le traitement pourrait être personnalisé pour chaque enfant, en fonction notamment du développement de la maladie. Les pistes scientifiques exploitées à l’étranger seraient étudiées d’une manière impartiale, et ce même si le traitement/l’intervention devait avoir lieu dans un pays étranger.
  • La condamnation de toute attitude médicale conduisant à des pertes de chances de survie, même lorsqu’il s’agit d’une maladie qui est considérée comme incurable. Par ailleurs, la collaboration avec des confrères internationaux dont l’approche médicale pourrait apporter des résultats doit être fortement facilitée.
  • La réforme de l’allocation journalière de présence parentale pour les parents d’enfants gravement malades , afin de la revaloriser à hauteur du SMIC (contre 850€/mois) ou à 80% du salaire. Par ailleurs, nous demandons l’extension du capital décès pour les moins de 18 ans (cette mesure existe déjà pour les ayants-droits des salariés, chomeurs etc… décédés, à hauteur de 3400€ versés par la CPAM).

Comme DES Daughter Network, SIGNEZ la pétition!

En savoir plus
  • Regardez la vidéo EvaPourlaVie.
  • Les besoins des enfants oubliés , ParisMatch, 15 février 2015.
  • Cancer de l’enfant : le besoin d’interpeller les décideurs politiques, lachaineducoeur, 13/02/2015.
  • Cancer chez l’enfant : le scandale, laprovence, 12/02/2015.
  • À qui profite le règlement pédiatrique européen?, Prescrire, 28 novembre 2012 .
  • Découvrez nos post tagués Nicole Delepine.

2003 Recommendations for the Identification and Management of DES-Exposed Individuals

It is clear that DES has long-term effects that may develop over time

image of doctor-and-tablet
The health effects of DES exposure that may impact DES-exposed persons as they age are unknown; therefore, it is essential that health care providers continue to identify persons exposed to DES and continue to offer increased surveillance. Photo by NEC Corporation of America.

Abstract

Diethylstilbestrol (DES) update: recommendations for the identification and management of DES-exposed individuals, Journal of midwifery women’s health, NCBI PMID: 12589302, 2003 Jan-Feb.

Diethylstilbestrol (DES) was etiologically linked to clear cell adenocarcinoma of the vagina in 1971.

This 2003 article reviews on-going research and emerging information relevant to DES-related health risks, thereby enabling women’s health care providers to maintain an evidence-based practice for their DES-exposed patients.

To accomplish these goals, the Center for Disease Control and Prevention (CDC) has initiated a national education campaign. This article describes the reasons for this new initiative, the target audiences, the DES historical framework (including major studies and findings), and populations that are affected. Clinical steps for the identification and management of the DES-exposed individual and resultant implications for midwifery and women’s health practices are reviewed.

Overview

  • Introduction
  • Adenocarcinoma and Cervical Cancer
  • Other Cancers
  • Anatomic Abnormalities
  • Pregnancy Outcomes
  • Effects of DES on Sons Exposed in Utero
  • Gynecologic Care for DES Mothers
  • Diagnostic Procedures Used to Assess Adenosis in DES Daughters
  • Preconception Care for Women Exposed to DES in Utero
  • Obstetric Care of Women Exposed to DES in Utero
  • Hormone Replacement Therapy
More DES DiEthylStilbestrol Resources

Clinical trial registration, reporting, publication and FDAAA compliance: unacceptably low

More drug trial data should be online

image of clinical-trials
Trial disclosures for new drugs remain below legal and ethics standards, with wide variation in practices among drugs and their sponsors. Clinical Trials by Sanofi Pasteur.

2015 Study Abstract

Leading clinical research authorities are calling for more aggressive enforcement of requirements for public reporting of the results of experimental drug trials, in response to a recent STAT investigation that found widespread failures by eminent universities and pharmaceutical firms to file data on their clinical trials.

Objective
To evaluate clinical trial registration, reporting and publication rates for new drugs by: (1) legal requirements and (2) the ethical standard that all human subjects research should be publicly accessible to contribute to generalisable knowledge.

Design
Cross-sectional analysis of all clinical trials submitted to the Food and Drug Administration (FDA) for drugs approved in 2012, sponsored by large biopharmaceutical companies.

Data sources
Information from Drugs@FDA, ClinicalTrials.gov, MEDLINE-indexed journals and drug company communications.

Main outcome measures
Clinical trial registration and results reporting in ClinicalTrials.gov, publication in the medical literature, and compliance with the 2007 FDA Amendments Acts (FDAAA), analysed on the drug level.

Results
The FDA approved 15 drugs sponsored by 10 large companies in 2012. We identified 318 relevant trials involving 99 599 research participants. Per drug, a median of 57% (IQR 32–83%) of trials were registered, 20% (IQR 12–28%) reported results in ClinicalTrials.gov, 56% (IQR 41–83%) were published, and 65% (IQR 41–83%) were either published or reported results. Almost half of all reviewed drugs had at least one undisclosed phase II or III trial. Per drug, a median of 17% (IQR 8–20%) of trials supporting FDA approvals were subject to FDAAA mandated public disclosure; of these, a median of 67% (IQR 0–100%) were FDAAA-compliant. 68% of research participants (67 629 of 99 599) participated in FDAAA-subject trials, with 51% (33 405 of 67 629) enrolled in non-compliant trials. Transparency varied widely among companies.

Conclusions
Trial disclosures for new drugs remain below legal and ethics standards, with wide variation in practices among drugs and their sponsors. Best practices are emerging. 2 of our 10 reviewed companies disclosed all trials and complied with legal disclosure requirements for their 2012 approved drugs. Ranking new drugs on transparency criteria may improve compliance with legal and ethics standards and the quality of medical knowledge.

Sources and more information
  • Health officials call for better enforcement on clinical trial reporting, STAT news, DECEMBER 22, 2015.
  • Do drug-firm ties affect researchers’ reporting of study results?, STAT news, DECEMBER 18, 2015.
  • More drug trial data should be online, bostonglobe, DECEMBER 14, 2015.
  • Top institutions not reporting clinical trial results as required, STAT news, DECEMBER 13, 2015.
  • Clinical trial registration, reporting, publication and FDAAA compliance: a cross-sectional analysis and ranking of new drugs approved by the FDA in 2012, BMJ Open doi:10.1136/bmjopen-2015-009758, 12 November 2015.

Settlement effected for damages for victims of diethylstilbestrol (DES)

The collective settlement of diethylstilbestrol claims in the Netherlands is unique and highly beneficial for Dutch DES victims

collective settlement resource image
In 2007 the Dutch DES Fonds started payment to Diethylstilbestrol DES victims in a collective settlement.

Abstract

Nederlands tijdschrift voor geneeskunde, NCBI PubMed PMID: 17557761, 2007 May 26.

In 2007 the Dutch DES Fonds (DES Fund) starts payment to victims of exposure to diethylstilbestrol in a collective settlement.

This is unique in the world because the arrangement covers the entire range of DES-related disorders and individual persons do not have to start an expensive and emotionally taxing legal procedure with uncertain outcome, which would last several years. Individuals can now be compensated based on medical evidence of DES exposure and the presence of a DES-related disorder covered by the settlement.

In close collaboration with the DES Centre (an association of DES victims) a careful procedure was followed before this settlement was realised. The Dutch Expert Committee on DES-related Health Effects first reviewed the literature for evidence and established a list of disorders with a causal association with DES. For each DES-related disorder covered by the settlement, the appropriate compensation was determined by the attributive risk and the severity of the disease. The Dutch collective settlement is the result of close collaboration between all parties involved.

More DES DiEthylStilbestrol Resources

Epigenetics: Why Inheritance Is Weirder Than We Thought

How environmental information may be inherited transgenerationally at behavioral, neuroanatomical and epigenetic levels

Video published on 18 Nov 2015 by MinuteEarth‘s channel

Parental olfactory experience influences behavior and neural structure in subsequent generations.

More information