NPC sibling study

Can early diagnosis lead to better treatment for babies with NPC?
Recruitment goal
30
participants
Launched in
2020
Status
Active
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Partner logo

Overview

AllStripes is partnering with the Firefly Fund, the National Niemann-Pick Disease Foundation, Niemann-Pick Canada and Ara Parseghian Medical Research Fund to create a research database that will power multiple NPC research studies.

The first research project will focus on if early diagnosis and intervention result in better outcomes and quality of life for patients with NPC.

To move this research forward, we are looking for families of 30 sibling pairs with NPC willing to contribute their de-identified medical records. All data shared with researchers is de-identified, or anonymized, meaning no identifying information like name or phone number is shared.

Study goal

Our hope is to utilize the data to advocate for NPC to be added to newborn screening programs.

Research partners

About AllStripes

AllStripes is a platform that makes it easy for rare disease patients and caregivers to contribute to drug development research from home.

AllStripes improves the speed and design of drug trials by extracting and analyzing research-grade data from de-identified medical records, creating a pool of new knowledge about each rare condition.

Access your records, drive treatment research