Studies of Interest
Studies of Interest
At NAFTNet, we are dedicated to advancing research in fetal diagnosis, intervention, and therapy to improve outcomes for both patients and families. This page highlights current and upcoming clinical trials, observational studies, and research initiatives that may be relevant to patients, families, clinicians, and researchers within our community.
This page serves as a central resource to:
- Share opportunities for participation in research studies
- Promote awareness of ongoing scientific advancements
- Support collaboration among investigators and institutions
- Empower patients and families with access to cutting‑edge research
While NAFTNET does not endorse specific studies, we aim to provide accurate, up‑to‑date information to help individuals make informed decisions about participation. We encourage you to review this page regularly, as new studies are added as opportunities become available. Participation in research is voluntary, and we recommend discussing potential involvement with your healthcare provider.
If you are an investigator interested in sharing a study with the NAFTNet community, please contact us at info@naftnet.org to have your research considered for inclusion.
Prenatal Transplantation for Fetuses With Fanconi Anemia
This Phase I/II clinical trial evaluates the safety and efficacy of In Utero Hematopoietic Stem Cell Transplantation (IUHSCT) for the treatment of fetuses diagnosed with Fanconi Anemia (FA). The study aims to stabilize the baby’s blood and immune system before birth by leveraging natural maternal-fetal tolerance, effectively avoiding the toxic chemotherapy and immunoablation typically required for transplants after birth. The preclinical data in FA mice has been striking showing clear safety and efficacy. Eligible participants include maternal-fetal pairs where the fetus has a confirmed diagnosis of FA and is between 19 0/7 and 28 0/7 weeks gestation at the time of treatment. Inquiry to the trial is recommended upon first suspicion of FA prior to obtaining diagnostic testing to ensure optimal testing is obtained to enable efficient treatment. The investigational procedure involves harvesting maternal bone marrow-derived CD34+ enriched stem cells and infusing them into the fetal umbilical vein under ultrasound guidance. The primary objective is to evaluate the safety of the procedure for both the mother and the fetus, while secondary objectives include assessing technical feasibility and the establishment maternal donor chimerism. This non-randomized, open-label study will enroll up to 12 maternal-fetal pairs, with the initial safety run-in conducted at UCSF followed by expansion to Stanford University. By intervening early, the trial seeks to provide a preventative cure that prevents life-threatening bone marrow failure and reduces long-term cancer risks.
Navigating fetal conditions through a Reproductive Justice lens: lessons from composite cases in the United States
“Navigating fetal conditions through a Reproductive Justice lens: lessons from composite cases in the United States,” was just published in Reproductive Health. The editorial reflects a collaboration with SisterSong Women of Color Reproductive Justice Collective, supported by PolicyLab at Children’s Hospital of Philadelphia, and brings forward structural and policy challenges that shape how we care for patients navigating fetal conditions.
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