INTERNATIONAL RARE HISTIOCYTIC DISORDERS REGISTRY (IRHDR) |
BACKGROUND:
Histiocytoses are rare diseases caused by an excess of cells called histiocytes, which can infiltrate the skin, bones, lungs, liver, spleen and the central nervous system. These disorders can range from localized involvements that resolve spontaneously, to progressive disseminated forms that can be debilitating and sometimes life-threatening. The rare histiocytic disorders (RHD), or non-Langerhans cell disorders, are a diverse group of disorders that do not meet the criteria for Langerhans cell histiocytosis (LCH) or hemophagocytic lymphohistiocytosis (HLH). They include Juvenile xanthogranuloma family, Erdheim-Chester disease, Multifocal Reticulohistiocytosis, Rosai-Dorfman disease, Malignant Histiocytoses, ALK+ Histiocytosis, Indeterminate cell Histiocytosis, and Mixed Histiocytoses.
PURPOSE:
Physicians, patients and parents of children with rare histiocytoses frequently consult members of the Histiocyte Society on the management of these disorders. Very often, no specific recommendation about treatment can be made due to the lack of prospective outcome data for these rare entities. The creation of an International Rare Histiocytic Disorders Registry (IRHDR) will facilitate the collection and analysis of the clinical, epidemiological, treatment and survival data of patients with RHD. The registry will also provide expert pathology reviews and may lead to therapeutic recommendations or a framework for future clinical trials. A de-identified link between clinical data and companion biology studies may be accomplished in the future through the IRHDR. This may help understand the etiology of these rare diseases and identify potential therapeutic targets.
ELIGIBILITY TO PARTICIPATE IN THE IRHDR:
Each patient will be assigned a study identification number (Study ID). Identifying information such as the patient’s name and medical record number will excluded. No identifying information other than the patient’s study ID will be stored in the database.
PROCEDURES FOR SENDING PATHOLOGY SAMPLES TO THE DESIGNATED PATHOLOGY REVIEWER:
DESIGNATED PATHOLOGY REVIEWERS AND SHIPPING ADDRESSES:
North American Central Pathology Review Center
Samples from cases diagnosed in North America will be reviewed by Dr. Jennifer Picarsic.
*Please note new shipping address as of July 18, 2024
Shipping Address:
Jennifer Picarsic, MD
Marjory K. Harmer Memorial Endowed Chair for Pediatric Pathology
UPMC Children's Hospital of Pittsburgh, Chief of Pathology and Head of Laboratories
4401 Penn Ave.
Department of Pathology B260
Pittsburgh, PA 15224
picarsicjl@upmc.edu
Phone: 412-692-5650
South American Central Pathology Review Center
Those diagnosed in South America, Australia/New Zealand or Africa will be shipped to Dr Laura Galluzzo.
Shipping Address:
M. Laura Galluzzo Mutti
Patóloga Pediátrica
Htal Nacional de Pediatría Dr Prof J. P Garrahan
Combate de los Pozos 1881. CP 1245
Buenos Aires, Argentina
European Central Pathology Review Center
Cases from Europe will be shipped to Jean-François Emile, MD, PhD.
Shipping Address:
Jean-François Emile, MD, PhD
Service de pathologie
Hopital Ambroise Paré
9 Av. Charles de Gaulle
92104 Boulogne France
For questions or to register for the IRHDR contact irhdr.registry@sickkids.ca or arnelle.lardizabal@sickkids.ca.
The IRHDR is registered with ClinicalTrials.gov: NCT02285582
Updated July 2019