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 POSTINGS

 2025-05-17_MountSinai_vanMieghemT (5/6/2025) 
   

Study Name:  Core outcome set for spina bifida (COSMIC)

Principal Investigator:  Prof. Tim van Mieghem, Mount Sinai Hospital / Ontario Fetal Centre, [email protected]

Collaborating Investigator(s) and Patients Sought:  Anyone with clinical, research, or lived experience of fetal Spina Bifida with sufficient knowledge of English and internet access. This includes patients, caregivers, researchers, and all types of healthcare providers (surgeons, anesthetists, nurses, midwives, pediatricians, occupational therapists, social workers and so on.)

Participation Requested:
  • Complete 2–3 short online Delphi surveys over the next couple of months (≈10 minutes each).
  • If you wish, join a brief virtual meeting in late July to confirm the final list of outcomes.
  • Distribute this study to colleagues you may think are interested in participating in this initiative.

Study Website:  https://app2.welphi.com//Pages/RedirectPage.aspx?myXYQKZpuWCCCFfqUgpLAa1oFYSHv5g6NyT3NDrCeJA=

Study Information:  https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-020-04668-6

Funding: Tim van Mieghem is the recipient of a junior faculty award from the Department Of Obstetrics and Gynaecology at the University of Toronto.


 

 2024-06-19_KUH_MalmgrenCI (6/19/2024) 
   

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:  https://uuc-app041.its.uu.se/sawtooth/asagr372/vus/login.html

Funding:  None

 

 

 2024-01-23_BCH_ChungW (1/23/2024) 
   

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

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

Study Website:  https://careforkidsgenetics.org/dhreams/

Study Contact:  [email protected]

Collaborating Investigators Sought:  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?  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

 

 

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.