ORPHA:364013
Immune hydrops fetalis
Also known as: IHF · Immune HF · Immune fetal edema · Immune fetal hydrops
Publications
1,407
Trials
3
Interventional, condition-specific
Researchers
1,294
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
Immune hydrops fetalis (IHF), a form of HF, describes the excessive accumulation of fetal fluid within the fetal extravascular compartments and body cavities due to maternal rhesus (Rh) incompatibility.
How rare: How common this is has not been clearly measured.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0018221
- UMLS:C0455990
- NCIT:C111904
Additional Mondo synonyms (5)
immune HF · immune fetal edema · immune fetal hydrops · immune foetal hydrops · immune foetal oedema
Research stages
Trial readiness signals
Where this condition sits on an open-data research pipeline — not how close a treatment is, and not medical advice. Empty stages often mean “not in these databases under this Mondo ID,” not “impossible.”
2/6 stages with a signal
An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
1,407 matched papers (722 in last 10 years) Source
- Phenotype characterisedNot found
No HPO disease–phenotype associations via Monarch for these Mondo IDs
- Animal modelNot found
No Alliance genotype “model of” associations via Monarch for these Mondo IDs
- Orphan designationNot found
No FDA or EMA orphan-drug designation matched this disease via UMLS or preferred name Source
- Interventional trialPresent
3 matched on ClinicalTrials.gov (1 recruiting in sample)
Biology
Genes and phenotypes
Gene–disease validity from GenCC, plus phenotypes and animal models joined from Monarch Initiative via Mondo ID — not a clinical diagnosis aid.
Do we know what causes it?
Not yet — the cause hasn't been pinned down in GenCC.
No strong gene–disease assertion joined for this Orphanet entity.
Phenotypes (Monarch / HPO)
None returned for this Mondo ID. That often means “not linked under this ID,” not “no clinical features.”
Animal models (Monarch / Alliance)
None returned for this Mondo ID. Empty here is not proof that no model organism work exists under another name or gene.
Monarch fetch 2026-07-29
Therapies
Designations, candidates, and chemicals
FDA OOPD and EMA orphan designations, Open Targets clinical candidates, and CTD chemical associations via MyDisease.info. These never change the interventional-trial headline.
Orphan designation (FDA · EMA)
No designation matched this disease via UMLS or preferred name on the FDA OOPD mirror or EMA orphan register. Absence here is not proof that none exists under another wording.
Open Targets candidates
No drugs or clinical candidates returned for this Mondo ID on Open Targets.
CTD chemicals (MyDisease.info)
No CTD chemical associations returned for this Mondo ID.
Literature
Is anyone studying this?
1,407
1,407 papers have been published on this condition. That is a real research literature — still far smaller than common diseases (breast cancer: over 700,000 papers). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.
1,407 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 59 (publications denominator n=3967).
722 in the last 10 years · low confidence
Phrase hits: 1,407 · MeSH hits: 0
Who's working on it?
1,294
Distinct author names in 200 sampled papers — named people below.
Who's working on it?
People publishing on this condition (sampled Europe PMC records). Affiliation is the most recent found in that sample.
- 01Al-Kouatly HB10 papers · 2026
Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania, USA.
Papers in Europe PMC - 02Berger SI6 papers · 2026
Center for Genetic Medicine Research and Rare Disease Institute, Children's National Medical Center, Washington, DC, USA.
Papers in Europe PMC - 03Makhamreh MM6 papers · 2026
Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, TX, USA.
Papers in Europe PMC - 04Wodoslawsky S6 papers · 2025
Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA, USA.
Papers in Europe PMC - 05Critchlow E5 papers · 2024
Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, Pennsylvania, USA.
Papers in Europe PMC - 06Shivashankar K5 papers · 2026
Department of Obstetrics and Gynecology, University of Illinois College of Medicine, Chicago, IL, USA.
Papers in Europe PMC - 07Zhang Y5 papers · 2026
Department of Genetic Metabolism, Maternal and Child Health Hospital of Guangxi Zhuang Autonomous Region, Nanning, 530003, China.
Papers in Europe PMC - 08Rice SM4 papers · 2026
Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA, USA.
Papers in Europe PMC - 09Sparks TN4 papers · 2026
Center for Maternal-Fetal Precision Medicine, Division of Maternal-Fetal Medicine, University of California, San Francisco, CA, USA.
Papers in Europe PMC - 10Sun L4 papers · 2026
Fetal Medicine Unit and Prenatal Diagnosis Center, Shanghai First Maternity and Infant Hospital of Tongji University, Shanghai, China.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
3
interventional trials for this specific condition
3 interventional trials matched this specific condition name; 1 currently recruiting in our sample. 2 trials are registered for hydrops fetalis, the broader category — shown separately because they may or may not enrol this specific subtype.
Data as of 11 September 2026
3 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 86.7th percentile).
low confidence · 86.7th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
3 interventional trials matched after quoted-phrase search and title/condition post-filter.
- NCT05528796·ENROLLING BY INVITATION·Uncovering the Etiologies of Non-immune Hydrops Fetalis
Not reviewed·Conditions: Non-Immune Hydrops Fetalis·Matched via name phrase
Broader category: hydrops fetalis
2
Interventional trials for the parent category, exclusive of NCT IDs already counted above. Eligibility for this subtype is not guaranteed.
Worth raising with a clinician. How we count trials.
Recruiting under the broader category
- NCT05797272·RECRUITING·In-utero Hematopoietic Stem Cell Transplantation for the Treatment of Fetuses With Bart's Hydrops Fetalis Syndrome
Not reviewed·Conditions: Haemoglobin Barts Hydrops·Matched via name phrase
Other registries (secondary)
Broader net from EU CTIS, ISRCTN, and ICTRP when available — deduped against ClinicalTrials.gov IDs already counted above. Dual-model LLM relevance gates what we keep. These rows are not added to the interventional headline.
raw 7 · after dedupe 7 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 7 · dropped 0 · fetched 2026-07-30
Source notes: ictrp: Error: ICTRP public search unavailable (WHO portal is SPA-only; SOAP needs partnership). Tried: https://apps.who.int/tri
No secondary-registry studies passed dual-model relevance for this condition name (after dedupe).
Uncertain / not reviewed (7)
- isrctn·ISRCTN10469927·No longer recruiting·Can a 6-day guided hiking and mindfulness programme in biodiverse Alpine landscapes improve wellbeing and reduce rumination in older adults?
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN18181364·No longer recruiting·Role of heart-reactive antibodies in heart failure
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN26587549·No longer recruiting·Probiotics and vitamin C for the management of upper respiratory tract infections
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN70120536·No longer recruiting·Research into the changes of immune cells in spinal fluid after treatment with amitriptyline and spinal cord stimulation in neuropathic pain
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN41541516·No longer recruiting·Exercise Intervention for Multiple Sclerosis: the Sheffield ExIMS trial
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN57038506·Recruiting·A Phase 1 Multicenter Dose Escalation and Dose Expansion Study of the study drug MYTX-011 in Subjects with Non-Small Cell Lung Cancer Cell Lung Cancer – KisMET-01
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN23584582·No longer recruiting·Platform study Kalidescope: A Phase 1/2 Open-label Platform Study to Evaluate the Safety and Efficacy of Multiple Amivantamab-based Therapeutic Combinations in Participants with Advanced,
Unresectable Lung Cancer (LC)
ISA1 METalmark (now closed in UK): A phase I/II open-label platform study to evaluate the safety and efficacy of multiple amivantamab-based therapeutic combinations in participants with advanced, unresectable lung cancer
ISA2 Polydamas: A Phase 1/2 Study Evaluating the Safety and Efficacy of Amivantamab and Cetrelimab Combination Therapy in Metastatic Non-small Cell Lung Cancer
ISA3 SwalloWTail: A Phase 1/2 Study Evaluating the Safety and Efficacy of Amivantamab and Docetaxel Combination Therapy in Metastatic Non-small Cell Lung Cancer
skipped — LLM skipped (--skip-llm)
Where to find support
Condition-specific patient organisations, when Orphanet lists them, are on the disease’s Orphanet page. We also link umbrella groups that support undiagnosed and ultra-rare families.
Orphanet entry for Immune hydrops fetalis — check Associations / patient organisations on that page.
India — NPRD
Last verified 2026-07-26This ORPHAcode is not on our curated NPRD list (direct or Mondo-parent match). That does not decide clinical eligibility; families in India should ask a notified Centre of Excellence about current coverage.
Hand-curated for this project. ORPHAcode mappings are best-effort and may be incomplete or imprecise for umbrella categories. Parent (Mondo) matches mean the policy lists a broader category — confirm eligibility with a Centre of Excellence. Financial entitlements summarised from public policy statements and may change. This is not official government guidance.
How we counted this
Europe PMC query (preferred label + any corrected label + Orphanet and Mondo exact synonyms, stoplisted; unioned with resolved MeSH labels when available). UMLS / OMIM / NCIT cross-references are stored on the overview but are not added to the query string.
"Immune hydrops fetalis" OR "Immune HF" OR "Immune fetal edema" OR "Immune fetal hydrops" OR "immune foetal hydrops" OR "immune foetal oedema"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Immune hydrops fetalis" OR "Immune HF" OR "Immune fetal edema" OR "Immune fetal hydrops" OR "immune foetal hydrops" OR "immune foetal oedema"
Interventional trials matched via: phrase (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).
Study-type breakdown: 3 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Parent-category trials query:
"hydrops fetalis"
Query health: ok — strategies attempted: phrase; with hits: phrase
Run this search on ClinicalTrials.gov
Synonyms dropped by stoplist: IHF
Confidence reasoning
- Preferred label is multi-word and distinctive
- 1 synonym(s) dropped by stoplist (may under-count)
- No label/synonym collisions with other diseases in this corpus
- Publication count (1407) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity
Ingested 2026-07-27T14:45:46.610Z