Creating a national database for patients with hypoparathyroidism and pseudohypoparathyroidism in Italy
Official title: Creation, Management and Analysis of a National Database of Patients Affected by Hypoparathyroidism or Pseudohypoparathyroidism
Run by F.I.R.M.O. - Fondazione Italiana Ricerca sulle Malattie dell'Osso - Ente del Terzo Settore · NCT06645899 · Data updated 2026-11-12
This study is creating a national database to collect and share information about patients with hypoparathyroidism and pseudohypoparathyroidism in Italy to better understand these rare conditions.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 600 (estimated) |
| Sponsor | F.I.R.M.O. - Fondazione Italiana Ricerca sulle Malattie dell'Osso - Ente del Terzo Settore Academic / other |
| Locations | 41 sites (Alessandria and 40 other locations) |
| Status | Recruiting |
| Started | November 4, 2024 |
| Main results expected | November 4, 2034 |
| Study ends | November 4, 2034 |
| Registry record updated | January 23, 2025 |
| Trial ID | NCT06645899 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study include individuals diagnosed with chronic hypoparathyroidism or pseudohypoparathyroidism.
✕Probably not a fit
Patients with other unrelated endocrine disorders or those not diagnosed with hypoparathyroidism or pseudohypoparathyroidism may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to establish and manage a multicenter national database that collects and analyzes clinical, genetic, and therapeutic data from patients diagnosed with hypoparathyroidism or pseudohypoparathyroidism across Italy. Involving 41 specialized clinical centers, the study will gather data over a 10-year period through both retrospective and prospective methods. The goal is to enhance understanding of these rare endocrine disorders by documenting a wide range of patient characteristics and treatment outcomes.
Why it matters
Potential benefit: If successful, this study could lead to improved diagnosis, treatment strategies, and management of hypoparathyroidism and pseudohypoparathyroidism.
How similar studies have gone: While there may be limited data on similar databases for these specific conditions, the approach of creating a comprehensive patient registry has shown success in other rare disease contexts.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Cohort 1: chronic hypoparathyroidism (all etiological forms) * Cohort 2: pseudohypoparathyroidism Exclusion Criteria: * None
Where it's running
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UO Endocrinologia e Malattie del Ricambio, Azienda Ospedaliero Universitaria di Ferrara, Sezione di Endocrinologia, Geriatria e Medicina Interna, Dipartimento di Scienze Mediche, Università degli Studi di Ferrara
Ferrara, Italy Recruiting -
SOD Malattie del Metabolismo Minerale ed Osseo, Azienda Ospedaliero-Universitaria Careggi
Florence, Italy Recruiting -
Donatello Bone Clinic, Casa di Cura Villa Donatello
Sesto Fiorentino, Italy Recruiting -
IRCCS Materno-Infantile Burlo Garofolo
Trieste, Italy Recruiting -
SC Pediatria e Pronto Soccorso Pediatrico - AOU SS. Antonio e Biagio e C. Arrigo
Alessandria, Italy Not yet recruiting -
U.O.C. Endocrinologia, Azienda Ospedaliero Universitaria Policlinico Consorziale, Università degli Studi di Bari "Aldo Moro"
Bari, Italy Not yet recruiting
Show 35 more locations
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Unità di Pediatria, IRCCS Azienda Ospedaliero-Universitaria di Bologna
Bologna, Italy Not yet recruiting -
UOC Endocrinologia e Prevenzione e Cura del Diabete, IRCCS Azienda Ospedaliero-Universitaria di Bologna, Dipartimento di Scienze Mediche e Chirurgiche (DIMEC), Alma Mater Studiorum Università di Bologna
Bologna, Italy Not yet recruiting -
Centro di Auxoendocrinologia e Genetica Medica della Clinica Pediatrica degli Spedali Civili di Brescia
Brescia, Italy Not yet recruiting -
Endocrinologia e Diabetologia, Azienda Ospedaliero-Universitaria di Cagliari, Presidio Ospedaliero Policlinico di Monserrato
Cagliari, Italy Not yet recruiting -
Diabetologia e Endocrinologia, Auxoendocrinologia, Children's Hospital Meyer IRCCS
Florence, Italy Not yet recruiting -
Ospedale Casa Sollievo della Sofferenza
Foggia, Italy Not yet recruiting -
Centro di Alta Specialità in Osteoporosi Pediatrica e Malattie del Metabolismo Calcio-Fosforo, U.O.C. Clinica Pediatrica, Dipartimento di Scienze Pediatriche Generali e Specialistiche IRCCS Istituto Giannina Gaslini
Genova, Italy Not yet recruiting -
Clinica Endocrinologica, Dipartimento di Medicina Interna e Specialità Mediche (DiMI), IRCCS Ospedale Policlinico San Martino, Università di Genova
Genova, Italy Not yet recruiting -
U.O.S.D. Centro Malattie Rare · Dipartimento di Pediatria IRCCS Ospedale Pediatrico Giannina Gaslini
Genova, Italy Not yet recruiting -
Dipartimento di Patologia Umana dell'adulto e dell'età evolutiva "Gaetano Barresi", Università degli Studi di Messina
Messina, Italy Not yet recruiting -
UOC di Endocrinologia, AOU Policlinico G. Martino, Dipartimento di Patologia Umana DETEV, Università di Messina
Messina, Italy Not yet recruiting -
Dipartimento di Malattie Endocrino-Metaboliche, IRCCS Istituto Auxologico Italiano
Milan, Italy Not yet recruiting -
Endocrinologia Infantile, UOU di Pediatria, IRCCS Ospedale San Raffaele
Milan, Italy Not yet recruiting -
IRCCS Ospedale San Raffaele
Milan, Italy Not yet recruiting -
SC Endocrinologia, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
Milan, Italy Not yet recruiting -
Dipartimento di Medicina Clinica e Chirurgia; Unità di Endocrinologia, Diabetologia e Andrologia; Università degli Studi di Napoli Federico II
Naples, Italy Not yet recruiting -
UOC di Endocrinologia e Malattie del Metabolismo, AOU Università degli Studi della Campania Luigi Vanvitelli
Naples, Italy Not yet recruiting -
UOS di Endocrinologia Pediatrica, Dipartimento Materno Infantile, AOU Federico II
Naples, Italy Not yet recruiting -
UOSD Malattie Neuro-Endocrine, Centro Obesità, Dipartimento di Neuroscienze e Riabilitazione, AORN Santobono-Pausilipon
Naples, Italy Not yet recruiting -
SCDU Endocrinologia Azienda Ospedaliero-Universitaria Maggiore della Carità di Novara
Novara, Italy Not yet recruiting -
Endocrinologia, Clinica Polispecialistica San Carlo
Paderno Dugnano, Italy Not yet recruiting -
Unità di Chirurgia Endocrina, Dipartimento di Chirurgia, Oncologia e Gastroenterologia, Università di Padova
Padova, Italy Not yet recruiting -
UOC Endocrinologia, DIMED, Azienda Ospedaliero-Universitaria di Padova
Padova, Italy Not yet recruiting -
Unità Operativa Endocrinologia 2, Azienda Ospedaliera Universitaria Pisana
Pisa, Italy Not yet recruiting -
Dipartimento di Medicina Sperimentale, "Sapienza" Università di Roma, Roma - UOC Endocrinologia, Policlinico Umberto I di Roma
Roma, Italy Not yet recruiting -
Unità di Endocrinologia e Andrologia, Dipartimento di Medicina Clinica e Molecolare, AOU Sant'Andrea, Centro di eccellenza ENETS, Università Sapienza di Roma
Roma, Italy Not yet recruiting -
UOC di Endocrinologia e Diabetologia, UOS di Endocrinologia Pediatrica, IRCCS Ospedale Pediatrico Bambino Gesù
Roma, Italy Not yet recruiting -
UOC Patologie osteo-metaboliche e della tiroide, Fondazione Policlinico universitario Campus Bio-Medico
Roma, Italy Not yet recruiting -
UOC di Endocrinologia, Diabetologia e Andrologia Medica, IRCCS Humanitas Research Hospital
Rozzano, Italy Not yet recruiting -
Dipartimento di Scienze Mediche, Chirurgiche e Neuroscienze, Policlinico Santa Maria delle Scotte, Università di Siena
Siena, Italy Not yet recruiting -
Endocrinologia Pediatrica Ospedale Infantile regina Margherita-Dipartimento di Scienze di Sanità Pubblica e Pediatriche, Università degli studi di Torino
Torino, Italy Not yet recruiting -
SCDU Endocrinologia Diabetologia e Malattie del Metabolismo, AOU Città della Salute e della Scienza di Torino, Università di Torino
Torino, Italy Not yet recruiting -
SCDU Endocrinologia Oncologica, AOU Città della Salute e della Scienza di Torino, Università di Torino
Torino, Italy Not yet recruiting -
SOC Endocrinologia, Azienda Sanitaria-Universitaria Friuli Centrale
Udine, Italy Not yet recruiting -
UOS di Endocrinologia, Policlinico GB Rossi, Azienda Ospedaliera Universitaria Integrata di Verona
Verona, Italy Not yet recruiting
Study contacts
- Study coordinator: Maria Luisa Brandi, MD, PhD
- Email: marialuisa@marialuisabrandi.it
- Phone: 0039-055-2336663
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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German Hypoparathyroidism Registry
This registry in Germany collects information from adults with chronic hypoparathyroidism or pseudohypoparathyroidism to better understand how the condition affects people over time and to support future research.
-
Encaleret for Chronic Hypoparathyroidism: Testing if it helps symptoms and safety
This study tests whether taking encaleret pills can help people with chronic hypoparathyroidism, while being safe and tolerable.
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Palopegteriparatide in adolescents with long-term hypoparathyroidism
This study tests whether a once-daily palopegteriparatide shot helps adolescents with long‑standing hypoparathyroidism and whether it’s safe for them.
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Canvuparatide vs placebo in adults with hypoparathyroidism
This study tests whether weekly canvuparatide can help adults with hypoparathyroidism feel better and keep calcium levels steady compared with a placebo.
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NIRAF-guided identification of parathyroids during thyroidectomy
A wearable near-infrared autofluorescence device is being tested to help surgeons find and protect the parathyroid glands during thyroid surgery in adults.
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Pregnancy registry tracking outcomes after YORVIPATH exposure during pregnancy and breastfeeding
This registry collects information from pregnant or breastfeeding people with hypoparathyroidism who took YORVIPATH to see if the exposure affects pregnancy, the baby, or infant outcomes through the first year of life.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.