Jul 25, 2024: Four new South American profiles added from Close-Up

With data starting in 2022, Close-Up's Non-Retail Pharma Market Prescription Data On Physician Level for Drugs provide a mapping of product performance in the market by indication and treatment line. The audit is designed to serve the market of "High Cost" products, which cover therapeutic areas such as oncological pathologies, autoimmune diseases, "rare" diseases, etc.

IQVIA Hospital Information System (HIS) - Japan

Database Contact Data

RWDassets@iqvia.com

Alternate Contact

N/A

References of Studies Using/Describing Database

Masaya H, Kenji H, Masafumi O, Ainiwaer D, Masaaki I, Takeshi A. PCV29 Iqvia Hospital Information System DATA Secondary Use for Outcome Identification to Assess the Validity of Definitions. Value in Health Regional Issues. 2020 Sep 1;22:S31.

For information regarding more publications, please contact IQVIA.

Jul 23, 2024: New profile added - Registry for Primary Immunodeficiencies (ESID)

Established as an informal group in 1983 and becoming a society in 1994, the European Society for Immunodeficiencies (ESID) is a non-profit organization with data across several countries of Europe whose main objectives are to facilitate the exchange of ideas and information among doctors, nurses, biomedical investigators, patients and their families concerned with primary immunodeficiency diseases and also to promote research on causes, mechanisms and treatment of these disorders.

ESID Online Registry for Primary Immunodeficiencies (Germany)

Database Contact Data

Prof. Markus G. Seidel
Chairperson WP Registry (2022-2026)
ESID Registry
Phone: +43 316 385 80215
Email: registry@esid.org

Alternate Contact

ESID Registry
Email: esid-registry@uniklinik-freiburg.de  

References of Studies Using/Describing Database

1. Vakkilainen S, Ahonen K, Mäkitie O. Validation of Risk Factors for Early Mortality in Cartilage-Hair Hypoplasia. Journal of Clinical Immunology. 2024 Jun;44(5):1-4.

2. Fischer M, Olbrich P, Hadjadj J, Aumann V, Bakhtiar S, Barlogis V, von Bismarck P, Bloomfield M, Booth C, Buddingh EP, Cagdas D, Castelle M, Chan AY, Chandrakasan S, Chetty K, Cougoul P, Crickx E, Dara J, Deyà-Martínez A, Farmand S, Formankova R, Gennery AR, Gonzalez-Granado LI, Hagin D, Hanitsch LG, Hanzlikovà J, Hauck F, Ivorra-Cortés J, Kisand K, Kiykim A, Körholz J, Leahy TR, van Montfrans J, Nademi Z, Nelken B, Parikh S, Plado S, Ramakers J, Redlich A, Rieux-Laucat F, Rivière JG, Rodina Y, Júnior PR, Salou S, Schuetz C, Shcherbina A, Slatter MA, Touzot F, Unal E, Lankester AC, Burns S, Seppänen MRJ, Neth O, Albert MH, Ehl S, Neven B, Speckmann C. JAK inhibitor treatment for inborn errors of JAK/STAT signaling: An ESID/EBMT-IEWP retrospective study. J Allergy Clin Immunol. 2024 Jan;153(1):275-286.e18.

3. Stapornwongkul C, Nieters A, Staus P, Rusch S, Delor A, Baumann U, Wehrle J, Boerries M, Seidel MG, Grimbacher B, Kindle G. Research on Rare Diseases in Germany–The GAIN Registry: a registry for individuals with congenital multi-organ autoimmune diseases. Journal of Health Monitoring. 2023 Dec;8(4):24.

4. Scheible R, Rusch S, Maccari ME, Seidel MG, Ehl S, Nieters A, Kindle G. Json2Xlsx: Extraction and visualization of nested data in a sparse spreadsheet. Software Impacts. 2023 Nov 1;18:100588.

5. Maccari ME, Wolkewitz M, Schwab C, Lorenzini T, Leiding JW, Aladjdi N, Abolhassani H, Abou-Chahla W, Aiuti A, Azarnoush S, Baris S, Barlogis V, Barzaghi F, Baumann U, Bloomfield M, Bohynikova N, Bodet D, Boutboul D, Bucciol G, Buckland MS, Burns SO, Cancrini C, Cathébras P, Cavazzana M, Cheminant M, Chinello M, Ciznar P, Coulter TI, D'Aveni M, Ekwall O, Eric Z, Eren E, Fasth A, Frange P, Fournier B, Garcia-Prat M, Gardembas M, Geier C, Ghosh S, Goda V, Hammarström L, Hauck F, Heeg M, Heropolitanska-Pliszka E, Hilfanova A, Jolles S, Karakoc-Aydiner E, Kindle GR, Kiykim A, Klemann C, Koletsi P, Koltan S, Kondratenko I, Körholz J, Krüger R, Jeziorski E, Levy R, Le Guenno G, Lefevre G, Lougaris V, Marzollo A, Mahlaoui N, Malphettes M, Meinhardt A, Merlin E, Meyts I, Milota T, Moreira F, Moshous D, Mukhina A, Neth O, Neubert J, Neven B, Nieters A, Nove-Josserand R, Oksenhendler E, Ozen A, Olbrich P, Perlat A, Pac M, Schmid JP, Pacillo L, Parra-Martinez A, Paschenko O, Pellier I, Sefer AP, Plebani A, Plantaz D, Prader S, Raffray L, Ritterbusch H, Riviere JG, Rivalta B, Rusch S, Sakovich I, Savic S, Scheible R, Schleinitz N, Schuetz C, Schulz A, Sediva A, Semeraro M, Sharapova SO, Shcher… See abstract for full author list ➔ , Activated phosphoinositide 3-kinase δ syndrome: Update from the ESID Registry and comparison with other autoimmune-lymphoproliferative inborn errors of immunity. J Allergy Clin Immunol. 2023 Oct;152(4):984-996.e10.

6. Staus P, Rusch S, El-Helou S, Müller G, Krausz M, Geisen U, Caballero-Oteyza A, Krüger R, Bakhtiar S, Lee-Kirsch MA, Fasshauer M, Baumann U, Hoyer BF, Farela Neves J, Borte M, Carrabba M, Hauck F, Ehl S, Bader P, von Bernuth H, Atschekzei F, Seppänen MRJ, Warnatz K, Nieters A, Kindle G, Grimbacher B. The GAIN Registry - a New Prospective Study for Patients with Multi-organ Autoimmunity and Autoinflammation. J Clin Immunol. 2023 Aug;43(6):1289-1301.

7. García-García A, Pérez de Diego R, Flores C, Rinchai D, Solé-Violán J, Deyà-Martínez À, García-Solis B, Lorenzo-Salazar JM, Hernández-Brito E, Lanz AL, Moens L, Bucciol G, Almuqamam M, Domachowske JB, Colino E, Santos-Perez JL, Marco FM, Pignata C, Bousfiha A, Turvey SE, Bauer S, Haerynck F, Ocejo-Vinyals JG, Lendinez F, Prader S, Naumann-Bartsch N, Pachlopnik Schmid J, Biggs CM, Hildebrand K, Dreesman A, Cárdenes MÁ, Ailal F, Benhsaien I, Giardino G, Molina-Fuentes A, Fortuny C, Madhavarapu S, Conway DH, Prando C, Schidlowski L, Martínez de Saavedra Álvarez MT, Alfaro R, Rodríguez de Castro F; ESID Registry Working Party; COVID Human Genetic Effort; Meyts I, Hauck F, Puel A, Bastard P, Boisson B, Jouanguy E, Abel L, Cobat A, Zhang Q, Casanova JL, Alsina L, Rodríguez-Gallego C. Humans with inherited MyD88 and IRAK-4 deficiencies are predisposed to hypoxemic COVID-19 pneumonia. J Exp Med. 2023 May 1;220(5):e20220170.

8. Cynthia Stapornwongkul, Alexandra Nieters, Paulina Staus, Stephan Rusch, Anita Delor, Ulrich Baumann, Julius Wehrle, Melanie Boerries, Markus G. Seidel*, Bodo Grimbacher, Gerhard Kindle.  Forschung zu Seltenen Erkrankungen in Deutschland – Das GAIN-Register: Ein Register für Personen mit angeborenen Multi-Organ-Autoimmunerkrankungen [GERMAN], * Im Namen der ESID Registry Working Party https://esid.org/Working-Parties/Registry-Working-Party, Journal of Health Monitoring · 2023 8(4), DOI 10.25646/11707, Robert Koch-Institut, Berlin

9. Abolhassani H, Avcin T, Bahceciler N, Balashov D, Bata Z, Bataneant M, Belevtsev M, Bernatowska E, Bidló J, Blazsó P, Boisson B, Bolkov M, Bondarenko A, Boyarchuk O, Bundschu A, Casanova JL, Chernishova L, Ciznar P, Csürke I, Erdős M, Farkas H, Fomina DS, Galal N, Goda V, Guner SN, Hauser P, Ilyina NI, Iremadze T, Iritsyan S, Ismaili-Jaha V, Jesenak M, Kelecic J, Keles S, Kindle G, Kondratenko IV, Kostyuchenko L, Kovzel E, Kriván G, Kuli-Lito G, Kumánovics G, Kurjane N, Latysheva EA, Latysheva TV, Lázár I, Markelj G, Markovic M, Maródi L, Mammadova V, Medvecz M, Miltner N, Mironska K, Modell F, Modell V, Mosdósi B, Mukhina AA, Murdjeva M, Műzes G, Nabieva U, Nasrullayeva G, Naumova E, Nagy K, Onozó B, Orozbekova B, Pac M, Pagava K, Pampura AN, Pasic S, Petrosyan M, Petrovic G, Pocek L, Prodeus AP, Reisli I, Ress K, Rezaei N, Rodina YA, Rumyantsev AG, Sciuca S, Sediva A, Serban M, Sharapova S, Shcherbina A, Sitkauskiene B, Snimshchikova I, Spahiu-Konjusha S, Szolnoky M, Szűcs G, Toplak N, Tóth B, Tsyvkina G, Tuzankina I, Vlasova E, Volokha A. Care of patients with inborn errors of immunity in thirty J Project countries between 2004 and 2021. Front Immunol. 2022 Dec 16;13:1032358.

10. Naumova E, Lesichkova S, Milenova V, Yankova P, Murdjeva M, Mihailova S. Primary immunodeficiencies in Bulgaria - achievements and challenges of the PID National Expert Center. Front Immunol. 2022 Sep 22;13:922752.

Jul 15, 2024: PARKreg is our first Parkinson’s Disease Registry profile

The Swedish National Parkinson's Disease Patient Registry (PARKreg) is a national quality registry that aims to contribute to Swedish Parkinson's care by spreading new knowledge through research and education. Established in 2010, the register currently covers approximately 15,681 people with Parkinson's (PwP), out of whom 10,735 are still alive and residing in Sweden (of an estimated total of 22,000 PwP).

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