Symptoms and General Pathology

All Conditions

Nervous System Diseases

Heart and Blood Diseases

Diseases and Abnormalities at or Before Birth

Neoplasms

Rare Diseases

Hemorrhage

Stroke

Aneurysm

Vascular Diseases

Arteriovenous Malformations

Congenital Abnormalities

Intracranial Hemorrhages

Vascular Malformations

Intracranial Arteriovenous Malformations

Cardiovascular Abnormalities

Hemangioma

Neoplasms, Vascular Tissue

Neoplasms by Histologic Type

Cerebrovascular Disorders

Brain Diseases

Central Nervous System Diseases

Central Nervous System Vascular Malformations

Nervous System Malformations

Intracranial Arterial Diseases

Intracranial Arteriovenous Malformation

Anti-Infective Agents

Central Nervous System Depressants

All Drugs and Chemicals

Ethanol

The standard TAE, without TVE, is used in patient allocated standard treatment.

The arterial approach will consist of at least one attempted catheterization for trans-arterial injection of liquid embolic.

Patients incompletely treated at the time of the final embolization procedure are adjudicated a failure to reach the primary outcome and can be treated using alternative standard options (including surgery, radiation therapy, conservative management). In addition, patients of the control group can also be offered TVE, if still feasible, once the TAE has been adjudicated to be a failure.

If the operator deems, on the table, for a trans-arterial injection to be too dangerous, no arterial injection is necessary. Treatment, where indicated, can be completed through other means.

The experimental treatment is an attempt to completely occlude the AVM using venous catheterization and retrograde EVOH injection during the final session. TAE can be performed to prepare for final TVE during the same or one previous preparatory session, or TAE can be used to rescue an incomplete TVE. In some patients, balloon catheterization is used trans-arterially to assist TVE.

It will be permissible to perform more than one treatment session when deemed necessary (occasionally to treat an AVM through the trans-venous route requires a two-stage approach, with a single trans-arterial attempt to decrease AVM filling prior to the definitive trans-venous approach, and this will be permitted).

The trans-venous strategy will consist of at least one transvenous injection of ethyl vinyl alcohol (EVOH), with the choice of delivery microcatheters and other technical details left to the individual operator's discretion).

The standard TAE, without TVE, is used in patient allocated standard treatment. The arterial approach will consist of at least one attempted catheterization for trans-arterial injection of liquid embolic.

If the operator deems, on the table, for a trans-arterial injection to be too dangerous, no arterial injection is necessary. Treatment, where indicated, can be completed through other means.

Standard Trans-Arterial Embolization (TAE)

The experimental treatment is an attempt to completely occlude the AVM using venous catheterization and retrograde EVOH injection during the final session.

The trans-venous strategy will consist of at least one transvenous injection of ethyl vinyl alcohol (EVOH), with the choice of delivery microcatheters and other technical details left to the individual operator's discretion.

Trans-Venous Embolization (TVE)

A new endovascular route for the treatment of brain AVMs may be possible in some cases: Trans-Venous Embolization (TVE). The technique uses microcatheters to navigate to the draining veins of AVM, to reach and then fill the AVM nidus retrogradely with liquid embolic agents until the lesion is occluded. This technique has the potential to improve on some of the problems with the arterial approach to AVM embolization, such as a low overall occlusion rate. However, by occluding the vein first, and filling the lesion with the embolic agent in a retrograde fashion, the method transgresses a widely held dogma in the surgical or endovascular treatment of AVMs: to preserve the draining vein until all afferent vessels have been occluded. Nevertheless, the initial case series have shown promising results, with high occlusion rates, and few technical complications.

The method is increasingly used in an increasing number of centers, but there is currently no research protocol to guide the use of this promising but still experimental treatment in a prudent fashion. Care trials can be designed to offer such an experimental treatment, taking into account the best medical interests of patients, in the presence of rapidly evolving indications and techniques.

Transvenous Approach for the Treatment of Cerebral Arteriovenous Malformations

Transvenous Approach for the Treatment of Cerebral Arteriovenous Malformations (TATAM): A Randomized Controlled Trial and Registry

Angiographic evidence of residual AVM at time of confirmatory catheter angiography

Failure to reach a safe and effective microcatheter position for embolization.

Any procedural complication leading to transient new neurological deficit.

Any procedural complication leading to new neurological deficit.

Any treatment-related complication that prolongs hospitalization by ≥5 days.

Incidence of new ischemia following treatment (Brain MR imaging prior to discharge with diffusion sequences).

Incidence of new admission to hospital during follow-up.

Incidence of intracranial hemorrhage during follow-up.

Incidence of residual AVM on confirmatory catheter angiography at 3(+/-1) months post-treatment.

Centre hospitalier de l'Université de Montréal (CHUM)

Interventional therapies include:

neurosurgery (surgical resection when the lesion is considered by a multidisciplinary team to be safely 'operable'); radiation therapy (when the AVM is smaller than 3 cm, and considered to not be safely 'operable'); radiosurgery, alone or in combination, with or without endovascular procedure; curative embolization (when the lesion is considered curable by embolization).

Patients with AVMs that the multidisciplinary team judges could potentially benefit from endovascular treatment prior to surgical resection or radiation therapy will then also be pre-randomly allocated to embolization or to no embolization.

The conservative, or medical management arm, involves pharmacological therapy as deemed appropriate for medical symptoms as determined by the treating investigator. Should patients in the conservative management arm develop hemorrhage or infarction related to their AVM, they then potentially become candidates for interventional therapy.

Surgical resection to be used when the lesion is considered by a multidisciplinary team to be safely 'operable'.

Neurosurgery

when the AVM is smaller than 3 cm, and considered to not be safely 'operable'.

Radiation therapy

Curative embolization, when the lesion is considered curable by embolization.

Embolization

Daniel Roy, MD

Tim Darsaut, MD

Rabih Tawk, MD

Thanh Nguyen, MD

Andrew Carlson, MD

Iuri Martins, MD

George Nunes Mendes, MD

Luciana Alves Oliveira Silva, MD

Gisele Sampaio, MD

Tim Darsaut, MD, PhD

Ruby Klink, PhD

Alain Weill, MD

Michel Bojanowski, MD

Chiraz Chaalala, MD

Jean-Paul Bahary, MD

David Roberge, MD

Laura Masucci, MD

Cynthia Ménard, MD

Christian Stapf, MD

Rodrigo Rivera Miranda, MD

Daniel Eduardo Mantilla Garcia, MD

Andres Felipe Ortiz Giraldo, MD

Elsa Magro, MD

Jean-Christophe Gentric, MD

Alessandra Biondi, MD

Xavier Barreau, MD

Patrick Courtheoux, MD

Emmanuel Chabert, MD

Frédéric Ricolfi, MD

Laurent Spelle, MD

Charble Mounayer, MD

Isabelle Pelissou-Guyotat, MD

Pierre-Hugues Roche, MD

Vincent Costalat, MD

Serge Bracard, MD

Hubert Desal, MD

Philippe Cornu, MD

Michel Piotin, MD

Denis Trystram, MD

Xavier Morandi, MD

Christine Papagiannaki, MD

François Proust, MD

Christophe Cognard, MD

Denis Herbreteau, MD

The objectives of this study and registry are to offer the best management possible for patients with brain arteriovenous malformations (AVMs) (ruptured or unruptured) in terms of long-term outcomes, despite the presence of uncertainty. Management may include interventional therapy (with endovascular procedures, neurosurgery, or radiotherapy, alone or in combination) or conservative management.

The trial has been designed to test a) whether medical management or interventional therapy will reduce the risk of death or debilitating stroke (due to hemorrhage or infarction) by an absolute magnitude of about 15% (over 10 years) for unruptured AVMs (from 30% to 15%); and, b) to test if endovascular treatment can improve the safety and efficacy of surgery or radiation therapy by at least 10% (80% to 90%).

As for the nested trial on the role of embolization in the treatment of Brain AVMs by other means: the pre-surgical or pre-radiosurgery embolization of cerebral AVMs can decrease the number of treatment failures from 20% to 10%. In addition,embolization of cerebral AVMs can be accomplished with an acceptable risk, defined as permanent disabling neurological complications of 8%.

Intracranial arteriovenous malformations (AVMs) are relatively uncommon but increasingly discovered lesions that can lead to significant neurological disability or death.1 Population-based data suggest that the annual incidence of discovery of a symptomatic AVM is approximately 1.1 per 100 000 population.7. AVMs commonly present following an intracranial hemorrhage or seizure, although with contemporary brain imaging techniques, an increasing number of incidental lesions are found.2

Intracranial AVMs are typically diagnosed before the age of 40 years old, with more than 50% of patients presenting following an intracranial hemorrhage, the most feared sequelae of harbouring an AVM.3 An AVM-related seizure is reported as the presenting feature in 20-25% of cases4, 5 and although these can sometimes be successfully managed with anti-epileptic agents, some AVMs lead to intractable seizures in spite of medication. Other presentations include headaches, focal neurological deficits, or pulsatile tinnitus.1

The available natural history studies indicate an overall risk of initial hemorrhage of approximately 2% to 4% per year, although the long-term consequences in terms of the probability of death or long-term disability following intracranial hemorrhage remains unclear.6-8 Mortality from the first hemorrhage has been reported to occur between 10-30% of patients with a ruptured AVM, although some more recent data suggest that the mortality rate may be lower and only 10-20% of survivors have long-term disability.9-11 Hemorrhagic presentation is considered the most reliable risk factor for a repeat hemorrhage.6, 8 Unfortunately, the natural history data available is not of sufficient quality (Level V) to support making management recommendations.

Over the last decade, there have been substantial developments in the management of intracranial AVMs. There has been an evolution of microsurgical as well as endovascular and radiosurgical techniques to treat these lesions. As the management options have evolved, individual and combined modality treatment protocols have been developed in different institutions for the management of AVMs. Current interventional therapy for brain arteriovenous malformations (BAVMs) is varied and includes open neurosurgical resection, radiosurgery, and endovascular management, either alone or in combination. The choice of management is largely dependent on the decisions of the local physicians that make up the treatment team, and a recent survey has demonstrated substantial variability in decision-making for almost all AVMs.12

Interventional therapies, when they are performed, are assumed to decrease the risk of initial or subsequent hemorrhage and therefore lead to better long-term outcomes, an assumption that has yet to be proven.

Although the question of which AVM treatment modality is the most appropriate first choice (surgery, radiosurgery, or embolization) remains controversial, consensus can be reached in several circumstances. Surgical evacuation of a hematoma exerting significant mass effect is an uncontested appropriate management, although many patients with a hemorrhagic presentation do not necessarily meet this threshold for surgical indication. Almost all other management choices remain debatable.13, 14 A systematic review has proposed that approximately 7.1% of surgical candidates, 6.6% of endovascular candidates, and 5.1% of radiosurgical candidates were facing permanent neurological deficits after treatment.15 The epidemiological study of Davies et al, using the Nationwide Inpatient Sample (NIS) data base and surrogates such as location at discharge, showed worse outcomes for surgical and endovascular management of both ruptured and unruptured AVMs.16

Current choices of interventional therapy for brain arteriovenous malformations are varied, with decisions made on a case-by-case basis, by the local clinical team. Often these decisions will change as the results of one particular attempted treatment modality become available. All interventional therapies are performed with the assumption that they will decrease the risk of initial or subsequent hemorrhage and lead to better long-term patient outcomes. Despite these laudable goals, there is no reliable evidence that interventional management of unruptured bAVMs is beneficial, and in patients judged to need interventional therapy, such as those patients presenting with ruptures, there is no randomized evidence that embolization is beneficial. Although no clinical trial data exist on the effect of interventional therapy even after AVM hemorrhage, the most contentious issue at present is whether interventional therapy should be considered for patients with incidentally discovered AVMs, whose lesions have not bled. In patients with unruptured AVMs, the best management strategy remains unknown, and interventions should be proposed only in the context of a randomized trial.

The potential role of embolization: Although endovascular AVM embolization can occasionally eradicate lesions without surgery or radiation therapy in selected cases, and although embolization may potentially improve the safety and efficacy of surgical or radiosurgical treatments in some other cases, it remains a contentious issue whether it is worth accepting the additional risks of endovascular treatment for a greater overall benefit for patients with brain AVMs that are treatable by surgery or radiation therapy. Some series have reported satisfactory results.20 It is possible that the overall morbidity and mortality of the combined interventional management strategy is increased when embolization is added to a surgical or radiosurgical procedure.17 Therefore, pre-surgical or pre-radiosurgical embolization can be offered, but only as a randomized allocation between embolization and no embolization, within the context of a trial.

Primary objective: In the spirit of care trials, the primary objective of the trial and accompanying registry is to offer the best management possible for patients with brain AVMs (ruptured or unruptured) in terms of long-term outcomes, despite the presence of uncertainty. Management may include interventional therapy (neurosurgery, or radiosurgery, alone or in combination, with or without endovascular procedures, alone or combined) or conservative management. An expert multidisciplinary study group will review patients on an individual basis to determine eligibility for the trial or registry parts of the study. The trial has been designed to test whether conservative management or interventional therapy will reduce the risk of disabling stroke or death.

Secondary objectives: To determine if interventional management is effective in the prevention of neurological events during 10 years. To determine the morbidity and mortality related to therapy. To follow-up and record the neurological events and the neurological status of all patients with brain AVMs recruited and managed in our institutions, regardless of management strategy chosen.

Hypotheses

A) Randomized comparison of interventional treatment and conservative management:

Primary hypothesis: Treatment of cerebral AVMs can decrease the number of disabling neurological events caused by the presence of the AVM (excluding peri-operative complications) from 30 to 15% within 10 years. (n = 266 minima) Secondary hypothesis: Treatment of cerebral AVMs can be accomplished with an acceptable up-front risk, defined as the occurrence of a permanent disabling neurological complication in less than 15% of patients)

B) Nested trial on the Role of embolization in the treatment of Brain AVMs by other means Primary hypothesis: Pre-surgical or pre-radiosurgery embolization of cerebral AVMs can decrease the number of treatment failures (failure to achieve angiographic cure) from 20% to 10% (n= 440).

Secondary hypothesis: Embolization of cerebral AVMs can be accomplished with an acceptable risk, defined as permanent disabling neurological complications of 8% (3.4 to 12.6%, 95% C.I.).

The study design is a prospective, multi-center, randomized, controlled trial and registry. Treatment assignment will not be masked; Interim study results will be kept confidential. The primary outcome is the composite event of death from any cause or disabling stroke (hemorrhage or infarction revealed by imaging and resulting in mRS \>2). Functional outcome status will be measured by the Rankin Scale, a widely used outcome measure for stroke. The secondary measures of outcome include adverse events, ruptures, and angiographic occlusion of the lesion.

Treatment of Brain AVMs (TOBAS) Study

Treatment of Brain AVMs (TOBAS) Study: A Randomized Controlled Trial and Registry

death or disabling stroke due to hemorrhage or infarction as revealed by imaging and resulting in mRS \>2.

The incidence of permanent (more than 3 months) disabling (mRS \>2) peri-operative (within 31 days) complications

Centre Hospitalier Régional et Universitaire de Brest

Head and Neck Neoplasms

Facies

Children aged 1 to 5 benefiting from a 3T MRI at the Necker Enfants-Malades hospital as part of the initial assessment of a tumor or cervico-facial malformation and at the first postoperative follow-up MRI if indicated for the care during a period of 12 months.

Children aged 1 to 5 benefiting from a 3T MRI at the Necker Enfants-Malades hospital as part of the initial assessment of an ENT pathology other than that of the patient group.

Addition to the sequences usually done for the care of these patients (CubeT2, Diffusion, CubeT1, CubeT2 fiesta, ASL, T1 injected with gadolinium), of a so-called "research" tractography sequence benefiting from CE marking and not requiring specific injection.

Search sequence acquisition time: 10 minutes.

Tractography MRI

Romain Luscan, MD

Hélène Morel

Vincent Couloigner, MD, PhD

Nathalie Boddaert, MD, PhD

Raphaël Levy, MD

Sabine Sarnacki, MD, PhD

3D modeling associated with the tracking of nerve fibers meets the needs of preoperative planning for tumors and cervico-facial congenital malformations. Indeed, these lesions are closely related to the cranial nerves and in particular nerve V (infratemporal fossa), nerve VII (temporal bone, parotido-masseter region), nerves IX, X, XI, XII and the chain cervical sympathetic (infratemporal and cervical regions). The development of a model of this region will therefore improve the surgical management of these children.

Children aged 1 to 5 benefiting from a 3T magnetic resonance imaging (MRI) at the Necker Enfants-Malades hospital for their care, meeting the inclusion criteria and participating in the study, will benefit during their MRI from the care, a sequence "Research" tractography MRI lasting 10 minutes. This sequence is already validated and proposed for tractography but in specialties other than pediatric ENT.

Tractography techniques are mathematical algorithms based on the diffusion tensor (micro-movements of water molecules in tissues) to reconstruct the path of nerve fibers in each volume unit of the MRI image (voxel).

3D modeling associated with the tracking of nerve fibers meets the needs of preoperative planning for tumors and cervico-facial congenital malformations. Indeed, these lesions are closely related to the cranial nerves.

3D Modeling of the Cervico-facial Region and Cranial Nerve Tractography: IMAG 2 ORL Project

Imagery analysis of tractography MRI and implementation of a tractography algorithm.

Evaluate the correlation between the 3D modeling and the intraoperative findings. Intraoperative evaluation of the position of the facial nerve and its relationship to the tumor.

Compare the course of the cranial nerves in children treated for tumor or congenital malformation compared to control patients treated for another ENT pathology: comparison of images obtained between patients and controls (radiological analysis).

Assess the presence of post-treatment sequelae nerve lesions for subject patients (surgery or radiochemotherapy) on follow-up MRI: during follow-up MRIs, analysis by tractography of the nerve related to the lesion.

Assistance Publique - Hôpitaux de Paris

Ear, Nose, and Throat Diseases

Hearing Loss

Deafness

Neurodegenerative Diseases

Neurologic Manifestations

Hearing Disorders

Ear Diseases

Otorhinolaryngologic Diseases

Sensation Disorders

Option to request non-medically actionable incidental information (after receiving education about them)

No option to request non-medically actionable incidental information

Experimental

James P Evans, MD, Ph.D

Gail Henderson, Ph.D

Jonathan S Berg, MD, Ph.D

Christine Rini, Ph.D

This study is part of a larger consortium project investigating the validity and best use of next-generation sequencing (in particular, whole exome sequencing, or WES) in clinical care. This sub-project is investigating benefits and harms of providing WES diagnostic and different types of incidental findings to adult patients and parents of pediatric patients who undergo WES because they have symptoms suggesting genetic disease.

This study is part of a larger consortium project investigating the validity and best use of next-generation sequencing (in particular, whole exome sequencing, or WES) in clinical care. Participants are patients who were either seen in the University of North Carolina Cancer and Adult Genetics Clinic or referred to the study by their physician. They will be approached by their physician or a genetic counselor for recruitment. Once enrolled, a clinical geneticist or genetic counselor will obtain consent and collect blood samples to be analyzed using WES. Results may include information related to a diagnosis and incidental information. Medically actionable incidental findings will be CLIA (Clinical Laboratory Improvement Amendments)-certified and returned to participants in a routine genetic counseling session, along with diagnostic findings. Eligible adult participants will be randomized to have the opportunity to choose to get certain types of non-medically actionable incidental findings, as well. Their decisions will be investigated, as will psychosocial and behavioral responses to sequencing and receiving sequencing information. This is a longitudinal, mixed methods study (i.e., multiple assessments pre- and post-return of results, with both quantitative and qualitative methods used to gather data). Because only the quantitative component of the study uses randomization, only measures and procedures associated with that component are described here.

NCGENES: North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing

Raw genotype calls from whole exome sequencing are shared with the database of Genotypes and Phenotypes (dbGaP). Other participant demographic variables include: age of onset, birthplace, sex, race, education level, age.

Data is uploaded in batches to the dbGaP website. Currently, the data for 403 participants who have consented for release of their data is available on the dbGaP website.

To access data, users must request authorized access by submitting a Data Use Agreement certified by their institution. This is reviewed by the DbGaP Data Access Committee for approval prior to accessing study data.

All data that is submitted to dbGaP, including individual participant data, is anonymous.

Measured with an adapted version of the multidimensional impact of testing scale (MICRA)

Measure is an adapted version of the multidimensional impact of testing scale MICRA)

Motivations of communications will also be assessed and examined for descriptive analyses.

Participants will answer questions about the extent to which they sought information about whole exome sequencing and results it produces. Questions also ask about sources of that information (e.g., the Internet, doctors) to provide descriptive data about how participants get information.

Also administered 2 wks after return of non-medically actionable incidental results for eligible adult patient participants who request them.

Behaviors include those related to diet, physical activity, smoking, drinking, and substance use.

Symptoms of depression and anxiety measured with the Hospital Anxiety and Depression Scale

Measured with the Medical Outcomes Study Short Form-12

National Human Genome Research Institute (NHGRI)

UNC Lineberger Comprehensive Cancer Center

University of North Carolina, Chapel Hill

Clinical Professor

Skin and Connective Tissue Diseases

Musculoskeletal Diseases

Skin Diseases

Carcinoma

Carcinoma, Squamous Cell

Genetic Diseases, Inborn

Skin Abnormalities

Epidermolysis Bullosa

Epidermolysis Bullosa Dystrophica

Skin Neoplasms

Skin Diseases, Vesiculobullous

Skin Diseases, Genetic

Rheumatic Diseases

Collagen Diseases

Connective Tissue Diseases

Dystrophic Epidermolysis Bullosa

Recessive Dystrophic Epidermolysis Bullosa

Participants will complete an online survey and submit photographs.

online survey

In this study, an artificial intelligence model to detect squamous cell carcinomas (SCC) on photos of recessive dystrophic epidermolysis bullosa (RDEB) skin is developed. The ultimate goal is to integrate this model into an app for patients and physicians, to help detect SCCs in RDEB early.

SCCs which rapidly metastasize are the main cause of death in adults with RDEB. The earlier an SCC is recognized, the easier it can be removed and the better the outcome. AI leverages computer science to perform tasks that typically require human intelligence and has recently been used to identify skin cancers based on images. We are currently developing an AI approach for early detection of SCC and distinction of malignancy from chronic wounds and other RDEB skin findings. The aim is to create a web application for patients with RDEB to upload images of their skin and get an output as to SCC present/ no SCC. This will be especially valuable for patients with difficult access to medical expertise and those who are hesitant to allow full skin examination at each visit, often because of fear of biopsies. Thus, this project will directly benefit patients by allowing early recognition of SCCs and will empower patients and their families by providing a home use tool.

So far, the study team has mainly used professional images (photographs taken in hospital settings by physicians, nurses, and clinical photographers) of both SCCs in RDEB and images of RDEB skin without SCC to develop and train the AI model. The images that are expected in a real-life setting will mostly be pictures taken by patients or family members with their phones or digital cameras. These images have different properties regarding resolution, focus, lighting, and backgrounds. Incorporating such images will be crucial in the upcoming phases of model development-testing and validation-for the web application be a success for patients.

This project will enroll adolescents and adults with RDEB and history of at least one SCC. The survey and consents will be provided in English, Spanish, German, French, Arabic, Chinese, and Russian. The study team is inviting people with RDEB around the world to participate and are hoping that approximately 100 people will provide images.

Participants will be asked to complete the survey and upload photographs of SCC(s) using the links below. Depending on the number of SCCs they have had and the number of photos they want to provide, the survey will take approximately 15-20 minutes to complete.

To participate in this study, please follow this link:

https://redcap.nubic.northwestern.edu/redcap/surveys/?s=JH9LHR4CC4R4H3HN

Artificial Intelligence Patient App for RDEB SCCs

Developing a Novel Artificial Intelligence Patient App to Recognize Squamous Cell Carcinoma (SCCs) in Recessive Dystrophic Epidermolysis Bullosa (RDEB): Image Collection

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Transvenous Approach for the Treatment of Cerebral Arteriovenous Malformations	NCT03691870	Arteriovenous M... Unruptured Brai... Ruptured Brain ...	Standard Trans-... Trans-Venous Em...	-	Centre hospitalier de l'Université de Montréal (CHUM)
Transvenous Approach for the Treatment of Cerebral Arteriovenous Malformations	NCT03691870	Arteriovenous M... Unruptured Brai... Ruptured Brain ...	Standard Trans-... Trans-Venous Em...	-	Centre hospitalier de l'Université de Montréal (CHUM)
Treatment of Brain AVMs (TOBAS) Study	NCT02098252	Unruptured Brai... Ruptured Brain ... Arteriovenous M... AVM BAVM	Neurosurgery Radiation thera... Embolization	5 Years -	Centre hospitalier de l'Université de Montréal (CHUM)
3D Modeling of the Cervico-facial Region and Cranial Nerve Tractography: IMAG 2 ORL Project	NCT05763615	Head and Neck N... Congenital Abno...	Tractography MR...	1 Year - 5 Years	Assistance Publique - Hôpitaux de Paris
NCGENES: North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing	NCT01969370	Cancer Cardiovascular ... Neurologic Dysf... Congenital Abno... Hearing Loss	Experimental	-	University of North Carolina, Chapel Hill
NCGENES: North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing	NCT01969370	Cancer Cardiovascular ... Neurologic Dysf... Congenital Abno... Hearing Loss	Experimental	-	University of North Carolina, Chapel Hill
NCGENES: North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing	NCT01969370	Cancer Cardiovascular ... Neurologic Dysf... Congenital Abno... Hearing Loss	Experimental	-	University of North Carolina, Chapel Hill
Artificial Intelligence Patient App for RDEB SCCs	NCT05843994	Epidermolysis B...	online survey	12 Years -	Northwestern University

Spots Global Cancer Trial Database for congenital abnormalities