Pregnancy and Medically Assisted Conception in Rare Diseases

Summary

Rare diseases frequently affect women of childbearing age. Pregnancy in these women has become less rare, but remains associated with high levels of complications. One obstacle to their optimal management during pregnancy is that there are no prospective studies of pregnancy during rare diseases and several connective tissue diseases. As a consequence, the management of these pregnancies is non-standardised in terms of treatment, monitoring (frequency of consultations, laboratory tests and ultrasound), and organisation of care.

Moreover, although these women (all diseases combined) are frequently exposed to medications potentially incompatible with pregnancy, little is known about the frequency of these exposures and especially their consequences to mother and child.

For these reasons, researchers and clinicians from different specialties created an interdisciplinary research group on pregnancy and rare diseases (GR2), intended to improve the management of these patients' pregnancies. Using a single computer server, the investigators plan to set up a large prospective study of pregnancies in patients with rare diseases: various forms of myositis, lupus, antiphospholipid syndrome, Sjogren syndrome, scleroderma, and inflammatory rheumatic diseases. The investigators objective is to analyse the complications of pregnancies in women with rare diseases and then to improve their management and their quality of life.

Conditions

• Rheumatoid Arthritis
• Spondyloarthritis
• Psoriatic Arthritis
• Systemic Lupus Erythematosus
• Antiphospholipid Syndrome
• Sjogren Syndrome
• Scleroderma
• Myositis
• Vasculitis
• Mastocytosis
• Various Autoimmune and/or Systemic and/or Rare Diseases

Sponsors & Collaborators

• SNFMI

  collaborator UNKNOWN

• SFR

  collaborator UNKNOWN

• CRAT

  collaborator UNKNOWN

• URC-CIC Paris Descartes Necker Cochin

  collaborator OTHER

• Assistance Publique - Hôpitaux de Paris

  lead OTHER

Principal Investigators

• Nathalie Costedoat-Chalumeau, PhD · Hôpital Cochin

Eligibility

Sex

FEMALE

Healthy Volunteers

No

Timeline & Regulatory

Start

2015-06-30

Primary Completion

2025-06-30

Completion

2025-12-31

Countries

• France

Study Locations