HIBA-Institutional Registry of Amyloidosis

NCT01347047 | Recruiting

• 1 other identifier: 1675
• Study Type: observational
• Target: 500
• Locations: 1 country
• Sites: 1

Brief Summary

• risk factors
• diagnosis
• prognosis
• treatment
• monitoring
• survival
• Describe the occurrence of amyloidosis in the population of HIBA, Hospital Italiano de Buenos Aires.
• Describe the characteristics of clinical presentation, evolution and predisposing factors of amyloidosis.

Conditions

Amyloidosis

Keywords

Amyloidosis; Known or Suspected; rare diseases

Outcome Measures

Primary Outcomes (4)

• Epidemiologic characteristics

  Survival anual

  From inclusion date (daignosis) until the date of death from any cause or date of last follow up(if not dead) assessed up to 10 years

• Epidemiologic characteristics

  Organ response

  From treatment date until the date of best organ response or documented progression or date of death from any cause, whichever came first, assessed up to 10 years

• From treatment to folow up, annualy

  Baseline description

  at baseline

• Treatment patterns

  Type of treatment, duration, adverse events, completition

  From diagnosis, evaluated after every line of treatment or annualy up to 10 years

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Adults over 18 years old with diagnosis or suspected amyloidosis of Italiano Hospital of Buenos Aires

You may qualify if:

• Patients over 18 years:
• Confirmed amyloidosis: Proof of deposit of amyloid pathology by tissue biopsy in abdominal fat, bone marrow, rectum or organ involved (eg, kidney, liver, sural nerve)
• Clinically compatible case of Amyloidosis :

You may not qualify if:

• Refusal to participate in the study or the informed consent process by the patient or legal representative or refusal to consent to participate in the study in the case of minors.

Sponsors & Collaborators

• Hospital Italiano de Buenos Aires: lead
• Austral University, Argentina: collaborator
• Hospital de Alta Complejidad en Red: collaborator
• Hospital de Clinicas José de San Martín: collaborator
• HOSPITAL BRITANICO DE BUENOS AIRES: collaborator
• Hospital Privado de Rosario: collaborator
• Centro de Educación Medica e Investigaciones Clínicas Norberto Quirno: collaborator
• La Fundacion Favaloro para la Investigacion y la Docencia Medica: collaborator
• Sanatorio Anchorena: collaborator
• Centro Médico Uruguayo, Uruguay: collaborator
• Clínica Foianini, Bolivia: collaborator
• Instituto Cardiovascular de Buenos Aires: collaborator

Study Sites (1)

Hospital Italiano de Buenos Aires

Buenos Aires, Buenos Aires, C1199, Argentina

RECRUITING

MeSH Terms

Conditions

Amyloidosis; Rare Diseases

Condition Hierarchy (Ancestors)

Proteostasis Deficiencies; Metabolic Diseases; Nutritional and Metabolic Diseases; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• María Lourdes Posadas-Martínez, MD

  Hospital Italiano de Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

• Elsa Nucifora, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Diego Hernan Giunta, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Dorotea Fantl, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Gustavo Greloni, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Maria Adela Aguirre, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Cesar Antonio Belziti, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Patricia Sorroche

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Soledad Saez

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Erika Brulc, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Diego Perez de Arenaza, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Eugenia Villanueva, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Marcelina Carretero, MD

  Hospital Italiano de Buenos Aires, Argentina

  STUDY CHAIR

• Carolina María Petit Cwirko, MD

  Clinica Foianini, Santa Cruz, Bolivia

  PRINCIPAL INVESTIGATOR

• Pablo Young, MD

  Hospital Británico, Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

• Gisela Streitenberger, MD

  Hospital de Alta Complejidad El Cruce Nestor Kirchner, Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

• Luciana Leon Cejas, MD

  Hospital Británico, Buenos Aires, Argentina

  STUDY CHAIR

• Veronica Volberg, MD

  Hospital de Clínicas José de San Martin, Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

• Sergio Juan Baratta, MD

  Hospital Austral, Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

• Juan Pablo Costabel, MD

  Instituto cardiovascular Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

• Carlos Dumont Dunayevich, MD

  Hospital Privado de Rosario, Santa Fe, Argentina

  PRINCIPAL INVESTIGATOR

• Alejandro Quiroga, MD

  Fundación Favaloro, Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

• Adrian Fernandez, MD

  Fundación Favaloro, Buenos Aires, Argentina

  STUDY CHAIR

• Josefina Parodi, MD

  Anchorena, Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

• Franco Leoni, MD

  Médica Uruguaya, Uruguay

  STUDY DIRECTOR

• Eduardo Ortuño Campos, MD

  Hospital Universitarios Austral, Buenos Aires, Argentina

  STUDY DIRECTOR

• Jorge Thierer, MD

  CEMIC, , Buenos Aires, Argentina

  PRINCIPAL INVESTIGATOR

Central Study Contacts

María L Posadas-Martínez, MD, PhD

CONTACT

+54 11 4959 0200; maria.posadas@hospitalitaliano.org.ar

Adela Aguirre, MD, PhD

CONTACT

+54 11 4959 0200; adela.aguirre@hospitalitaliano.org.ar

Study Design

• Study Type: observational
• Observational Model: ECOLOGIC OR COMMUNITY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: MD, PHD

Study Record Dates

• First Submitted: May 2, 2011
• First Posted: May 4, 2011
• Study Start: April 1, 2011
• Primary Completion (Estimated): January 1, 2030
• Study Completion (Estimated): January 1, 2030
• Last Updated: January 22, 2026

Record last verified: 2026-01

Data Sharing

• IPD Sharing: Will not share

Locations

AR (1)