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RecruitingNCT07072143PARTNERUpdated Jul 18, 2025

An International Study on Pediatric Patients With Rare Tumors.

An observational study in Paraganglioma/ Phaeochromocytoma, Melanoma and Other Malignant Neoplasms of Skin and Gastrointestinal Stromal Tumor (GIST), sponsored by Azienda Ospedaliera di Padova. Recruiting at 1 site in Italy. Open to participants aged 0 Years to 18 Years. Per ClinicalTrials.gov, last updated 2025-07-18.

Sponsored by Azienda Ospedaliera di Padova · Observational

From the registry’s dates

  • Started Jan 2025; still recruiting 1 year 9 months later.
Study type
Observational
Model
Other
Time perspective
Prospective
Enrollment
6,250
Ages
0 Years to 18 Years
Sex
All
01

Study summary

The PARTNER study is an international, prospective, observational study of paediatric patients with very rare tumours.

Read the detailed description

There are some very rare tumors (with an annual incidence of less than two per million children) that can affect children and adolescents. These neoplasms include a wide variety of cancers; some are rare at any age, while others are typical of adults but very rare in children. Due to their rarity, studies have so far been scarce, often lacking univocal diagnostic criteria, and more information is needed to improve treatment outcomes.

The aim of this study is to collect epidemiological, clinical, biological, radiological and treatment data on children and adolescents with rare cancers in order to improve our understanding of these tumors and how their clinical and biological characteristics affect treatment outcomes.

Due to the rarity of these malignancies, international collaboration is necessary to collect sufficient data on each tumour type.

While the investigators are not proposing specific treatments, the data collected will inform recommendations for the diagnosis and treatment of patients.

The PARTNER Study is an observational, prospective study. It is sponsored by Padua University Hospital AOUP (Italy), and all European centres collaborating with the EXPeRT group have been invited to participate. It is a non-profit study, meaning it has no commercial purpose, only the aim of improving knowledge and treatment for children with rare cancers. PARTNER activities are supported in different countries by national funds, as well as by the European Commission through the European Reference Network for Paediatric Oncology (ERN PaedCan). Please visit https://paedcan.ern-net.eu/ for more information.

02

Conditions studied

  • Paraganglioma/ Phaeochromocytoma
  • Melanoma and Other Malignant Neoplasms of Skin
  • Gastrointestinal Stromal Tumor (GIST)
  • Adrenocortical Tumor
  • Pancreatic Tumors
  • Esthesioneuroblastoma, Olfactory
  • Mesothelioma
  • Nasopharyngeal Carcinoma (NPC)
  • NUT Carcinoma
  • Pleuropulmonary Blastoma
  • Salivary Gland Tumors
  • Thymic Tumors
  • Thyroid Carcinoma
  • Appendiceal Cancers

Keywords

  • children
  • rare tumors
  • very rare tumors
  • adolescents
  • PARTNER Study
03

In context

Melanoma

3,370 studies on the registry are indexed under Melanoma; 578 are open to participants now.

This study's planned enrollment of 6,250 is above the median of 187 across 488 observational studies indexed under Melanoma.

Browse Melanoma studies →

Lead sponsor

Azienda Ospedaliera di Padova is the lead sponsor of 38 studies on the registry; 13 are open to participants now.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
0 Years to 18 Years
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

Children and adolescents (0-18 years) with a primary or relapsed Very Rare Tumor (VRT)

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  • Children and adolescents (age 0-18 years) with a primary or Very Rare Tumor diagnosed and/or treated in a participating country/center.
  • Written from the patient and/or the parent/legal guardian

Exclusion criteria

Exclusion Criteria:

  • Absence of Written from the patient and/or the parent/legal guardian
Terms in these criteria, in plain language(2)

Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.

Relapsed and refractory

Relapsed: the illness came back after treatment had worked. Refractory: it did not respond to treatment, or stopped responding while still on it.

Informed consent

Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.

You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.

05

Study design

Observational model
Other
Time perspective
Prospective
Enrollment
6,250 participants (estimated)
Patient registry
No
06

What researchers measure

Primary outcomes

  1. Epidemiology

    Evaluate the number of patients (aged 0-18 years) with different Very Rare Tumors in the different countries: observed cases will be compared with expected cases.

    Time frame: through study completion, an average of 1 year

  2. Use of International Recommendations

    The study aims to measure the number of patients treated for different neoplasms in different countries, and the proportion of those treated in accordance with the International Recommendations.

    Time frame: through study completion, an average of 1 year

  3. Survival of children and adolescents (0-18 years) affected by Very Rare Tumors

    The study will correlate the clinical characteristics of the tumor (size, site, extension) with the treatment, the risk of recurrence and survival.

    Time frame: through study completion, an average of 1 year

07

Study locations

1 of 1 sites recruiting
  • Pediatric Oncology Unit, University Hospital Padova [AOUP Azienda Ospedale Università Padova]
    Padova, Italy 35127, Italy
    Recruiting
    • Gianni Bisogno, Medical Doctor · Contactgianni.bisogno@unipd.it · 0039 0498211481
    • Martina Bonel, Study Coordinator · Contactmartina.bonel@unipd.it · 0039 049 8214413
    • Gianni Bisogno, Medical Doctor · Principal investigator
    • Calogero Virgone, Pediatric Surgeon · Sub investigator
08

References and documents

Publications

  • Orbach D, Ferrari A, Schneider DT, Reguerre Y, Godzinski J, Bien E, Stachowicz-Stencel T, Surun A, Almaraz RL, Dragomir M, Jani D, Ami TB, Roganovic J, Brecht IB, Ladenstein R, Bisogno G. The European Paediatric Rare Tumours Network - European Registry (PARTNER) project for very rare tumors in children. Pediatr Blood Cancer. 2021 Jun;68 Suppl 4:e29072. doi: 10.1002/pbc.29072. Epub 2021 Apr 29. PubMed 33913610 ↗
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Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reachedSimilar studies: half by the dot; the band is the middle halfHalf of similar studies reached it by the dot; the band is the middle half, from a quarter to three quarters

Started Jan 2025 (actual). Primary completion is estimated for Jan 2049, 287 months after the start.

Of 177 non-industry observational studies under Melanoma, half reached primary completion within 178 months of starting (the median), counting those still running; a quarter within 40 and three quarters within 320. This study's planned 287 months is above that.

Counting every sponsor, half of 236 studies reached it within 71 months; a quarter within 35 and three quarters within 223.

How these figures are worked out, and which studies are left out of them.

Registered
Apr 15, 2025
First posted
Jul 18, 2025
StartActual
Jan 25, 2025
Primary completionEst.
Jan 6, 2049
CompletionEst.
Jun 6, 2049
Last update
Jul 18, 2025
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Jul 18, 2025, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT07072143
Lead sponsor
Azienda Ospedaliera di Padova
Collaborators
St. Anna Children's Hospital, Vienna, Children's Hospital Zagreb, Centre Hospitalier Universitaire de La Réunion, FRANCE, Klinikum Dortmund, University Children's Hospital Tuebingen, Hellenic Oncology Research Group, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Kaplan Medical Center, Rehovot, Israel, Vilnius University Hospital Santaros Klinikos, University of Skopje, Gdansk Medical University (Poland), Centro Hospitalar do Porto, Bucharest Emergency Hospital, Institute for Oncology and Radiology Serbia, Belgrade, University Hospital Bratislava, University Medical Centre Ljubljana, University of Bilbao, Göteborg University, University Hospital, Paris
Responsible party
Gianni Bisogno (Professor of Paediatrics, Azienda Ospedaliera di Padova) — Principal investigator
First posted
Jul 18, 2025
Start date
Jan 25, 2025
Primary completion
Jan 6, 2049 (estimated)
Completion
Jun 6, 2049 (estimated)
Last update
Jul 18, 2025

Study contacts

Gianni Bisogno, MD
Contact
gianni.bisogno@unipd.it
0039 0498211481
Martina Bonel, CRC
Contact
martina.bonel@unipd.it
0039 04908211481
Gianni Bisogno, MD
principal investigator · Azienda Ospedale Università Padova - Italy

Oversight

Data monitoring committee
Yes
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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