ESID Online Registry for Primary Immunodeficiences (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).

Swedish National Parkinson's Disease Patient Registry (PARKreg) (Sweden)

Database Contact Data

Linnéa Edman-Persson 
Forskningssjuksköterska
Koordinator Parkinsonregister
Skånes Universitetssjukhus
Forskningsenhet Neurologi
221 85 Lund
SWEDEN
Email: Linnea.Edman-Persson@skane.se
Phone: +46 175501 

Alternate Contact

Sven Pålhagen
Email: sven.palhagen@karolinska.se

Per Odin
Email: per.odin@med.lu.se

Per Svenningsson
Email: per.svenningsson@karolinska.se

References of Studies Using/Describing Database

1. Janz C, Timpka J, Rosqvist K, Paul G, Storch A, Odin P. Non-Motor Symptom Management: Insights into Adherence to Treatment Guidelines in Parkinson's Disease Patients. J Parkinsons Dis. 2024;14(2):297-312.

2. Löhle M, Timpka J, Bremer A, Khodakarami H, Gandor F, Horne M, Ebersbach G, Odin P, Storch A. Application of single wrist-wearable accelerometry for objective motor diary assessment in fluctuating Parkinson's disease. NPJ Digit Med. 2023 Oct 17;6(1):194.

3. Rosqvist K, Odin P. Compliance with National and International Guidelines in the Treatment of Nonmotor Symptoms in Late-Stage Parkinson's Disease. Parkinsons Dis. 2023 Oct 10;2023:6667339.

4. von Below D, Wallerstedt SM, Bergquist F. Validation of the Swedish Patient-Reported Outcomes in Parkinson's Disease Scale in Outpatients. Mov Disord. 2023 Sep;38(9):1668-1678.

5. Norlin JM, Kellerborg K, Persson U, Åström DO, Hagell P, Martinez-Martin P, Odin P. Clinical Impression of Severity Index for Parkinson's Disease and Its Association to HealthRelated Quality of Life. Mov Disord Clin Pract. 2023 Jan 20;10(3):392-398.

6. Kellerborg K, Norlin JM, Odin P. The Relationship between PDQ-8 and Costs in Parkinson's Disease-A Swedish Register-Based Study. Mov Disord Clin Pract. 2022 Dec 15;10(2):231-237.

7. Skogar Ö, Nilsson M, Lökk J. Gender differences in diagnostic tools, medication, time to medication, and nonmotor symptoms in Parkinsonian patients. Brain Circ. 2022 Dec 6;8(4):192-199.

8. Åström DO, Simonsen J, Raket LL, Sgarbi S, Hellsten J, Hagell P, Norlin JM, Kellerborg K, Martinez-Martin P, Odin P. High risk of developing dementia in Parkinson's disease: a Swedish registry-based study. Sci Rep. 2022 Oct 6;12(1):16759.

9. Timpka J, Löhle M, Bremer A, Christiansson S, Gandor F, Ebersbach G, Dahlström Ö, Iwarsson S, Nilsson MH, Storch A, Odin P. Objective Observer vs. Patient Motor State Assessments Using the PD Home Diary in Advanced Parkinson's Disease. Front Neurol. 2022 Jul 12;13:935664.

10. Raket LL, Oudin Åström D, Norlin JM, Kellerborg K, Martinez-Martin P, Odin P. Impact of age at onset on symptom profiles, treatment characteristics and health related quality of life in Parkinson's disease. Sci Rep. 2022 Jan 11;12(1):526. 

Subscribe to