ISPD Collaboration Corner

The ISPD Collaboration Corner is a pathway for building inter-disciplinary research in fetal conditions and treatment. We invite interested researchers who are seeking additional investigators or patients to have their study posted here for a period of 3 years by completing the submission form provided on this page.

Listed below are studies seeking additional investigators and/or patients. If you are interested in participating in one of the studies listed on this page, please use the email address provided to contact the researcher directly.

Principal Investigators

Are you seeking additional investigators and/or patients for your study? Please complete and submit the study listing form to have your study listed on this page.

Submit a Study Listing

If you prefer, you may use a PDF submission form instead.

Studies will be posted for 3 years. If you need to make changes to your posting during that time, please contact the ISPD webmaster.



Study Name:  Preferences for reporting uncertain results - Health professionals’ preferences for prenatal tests

Principal Investigator:  Charlotta Ingvoldstad Malmgren, PhD, Karolinska University Hospital

Collaboration Sought:  Completion of Online Survey

Survey Website:

Funding:  None




Study Name:  Diaphragmatic Hernia Research & Exploration, Advancing Molecular Science (DHREAMS)

Principal Investigator:  Wendy Chung, MD, PhD, Boston Children's Hospital

Study Website:

Study Contact:

Collaborating Investigators Sought:  Yes

Investigator Role:  Collaborating investigators are responsible for consenting families at their local hospital. Samples are collected at the site and shipped directly to the coordinating center, samples do not need to be processed in any way before shipment. Clinical information is added to the study REDCap database by the local team.

Collaborating investigators will have access to the consortium database and are encouraged to utilize the data for analysis. Investigators are also included as authors in study publications.

Patients Sought?  Yes

Patient Description:  Anyone with a personal or family history of congenital diaphragmatic hernia (CDH) is eligible.

This study can be conducted entirely remotely and participants do not need to travel to enroll in DHREAMS.

Funding:  NIH-Funded




Study Name: Improving Prenatal Diagnosis for Brain Abnormalities

Principal Investigator: Neeta Vora, MD, University of North Carolina

Study coordinator: Kelly Gilmore, University of North Carolina,

Collaborating Investigator(s) Sought: No

Patients Sought:  Patients may be able to participate in this study if their pregnancy has a brain abnormality identified through second trimester fetal ultrasound. Both biological parents are required to provide a blood or saliva sample for sequencing alongside fetal DNA left over from an amniocentesis or CVS procedure. Please contact Ms. Gilmore for questions about eligibility.

Funding: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)



Study Name:  Intraamniotic Administrations of ER004 in Male Subjects With X-linked Hypohidrotic Ectodermal Dysplasia (EDELIFE)

Principal Investigator: Holm Schneider, M.D., University Erlangen-Nürnberg,

Collaborating Investigator(s) Sought: No

Patients Sought:  Pregnant women carrying a male fetus affected by XLHED (confirmed by sonographic diagnosis of a significantly reduced number of fetal tooth germs or by genetic diagnosis of an EDA mutation in the fetus). Enrolment requires getting in touch with the study site prior to gestational week 26.

Additional Information:  This is a prospective, open-label, genotype-match controlled, multicenter clinical trial to investigate the efficacy and safety of intraamniotic administration of ER004, an ectodysplasin A replacement protein, as a prenatal treatment for male subjects with XLHED.

Funding:  EspeRare Foundation, German Federal Ministry of Education and Research, and Pierre Fabre


If no studies are listed, there have been no studies submitted within the last 1100 days. Please return to check for further postings.

ISPD does not review nor specifically endorse any study posted to the Collaboration Corner. ISPD acts solely in the capacity as a facilitator. The submitter is responsible for the accuracy of the information provided and agrees to having the email address of the principal investigator posted on the ISPD website where it is visible to the general public.